August 2013 Surgeries

poodle_mum

chimamamia - use only white paper tape - nothing else. I have hyper sensitive skin and any tape will cause the same reaction as you explained. In the end I have worse sores from where the tape was that what I was originally covering. Even today at the doc's appointment - I had a different nurse than my usual nurse (guess she was on vacation) and she insisted on using the beige paper tape. I told her that I could only use the white tape. She wouldn't listen and ended up using the beige tape and by the time I got home an hour later it had ripped my skin :-(

Hope that you can use the white paper tape and it will help a lot.

LiLi1964

chimamamia - 4 port scars? Wow! Why did you have 4, if you don't mind my asking. I was told the port can stay in for years - have you been fighting leukemia for so long that you've had 4 port replacements?

Bare Escentuals foundation does work well for many "imperfections"; it's a great product that does work well and I guess I never would have thought to use it for the port scar...thanks for the suggestion!

I feel for you and all others who have allergies to different types of tape. Gosh, that has to be horrible having dressings over fresh wounds and then getting welts or burns from the tape used on top of it - OWWEEE!

babs6287

Lisa

You were right- I work for a derm/ps office-we just do ps on cysts, lumps and bumps and post mohs closures and minor ps surgeries. In both offices where I worked, we didn't do breast recons which is much more specialized.

LiLi1964

Babs - thanks for clarifying....I thought I was really losing it there and my memory was failing me!

I guess my only experience w/PS is all this breast stuff so I just assumed that was the type of office you managed.

I have a question for you - you have mentioned several times you stayed away from dairy while on chemo...can you tell me why?

Lisa

babs6287

Some cheeses are not pastuerized and I felt that eggs could be iffy . Didn't want to eat anything that could be a source of any kind of issues. I basically kept a diet of the way today's pregnant women eat. Certainly different from the way I ate when I was pregnant a million years ago!

LiLi1964

Well, everyone, no chemo again today. Good thing I'm not nervous and uptight about it because it would be a real roller-coaster ride now with twice having a start date just to have a halt called at the last minute when meeting w/MO beforehand.

She said after reading yesterdays surgery notes she would be more comfortable waiting a week before we start chemo. She wants to give my body at least a week to give that incision in my underarm a chance to heal instead of starting chemo today and having that wound not heal as quickly as it should. She also would really like to have pathology back on the node they removed before we start so she knows exactly what we are dealing with before any chemo is administered. So....we wait another week. She said prelim pathology could come back tomorrow but the full report will not be in until early next week.

The bad side is that it will now put me in the week opposite my husbands 4 work day schedule AND will put me on chemo treatments the weeks of Thanksgiving and Christmas. Oh well, can't keep putting it off (well, really have not been putting it off - health issues have surfaced that just must be handled first) but I am a bit relieved they didn't have to access that port less than 24 hours after it was placed (that was giving me a bit of anxiety). Still have considerable pain in the underarm and between that incision and the port placement, it seems to have made the right breast quite sensitive and feeling aggravated. I guess that's to be expected w/everything they did yesterday.

But today was not a loss. I asked some questions that have been piling up and she gave me very clear and informative answers.

• Fresh fruit and veggies are perfectly fine. There are 2 cancer types they want kept away from eating those foods during chemo but BC is not one of them - there are NO restrictions on my diet in any way, shape or form. She said to just make sure to wash fruits and veggies, as always, and there is no danger to them. Here's a trick, ladies, I learned from my sister-in-law....put your fruits and veggies in a strainer and sprinkle them with regular vinegar. Let sit for 1 minute and rinse. Kills the germs and kills any residue left behind from fertilizers. And I will let you all know....there is no vinegar taste by doing this (I thought there would be but there is not). Of course, ask your MO if you are worried about this but I'm taking my MO advice as I detest cooked veggies and only eat them raw. And raw is the best way to get all their nutritional value.
• Intercourse is fine but because they just don't know exactly to what extent the bodily fluids can be passed at anytime during chemo, a condom should be used at all times.
• She told me that at the most, after 2 chemo treatments my periods will likely stop and I will be thrown into permanent menopause (quite a nice benefit!). FYI - I've been peri-menopausal for 6 years already so we're really just speeding up what was happening anyway.
• She told me essential oils are perfectly safe as a holistic way of treating symptoms topically and many women find them helpful aromatically (especially peppermint for nausea). Essential oils have been used forever, literally, to treat illness and they are natural. And our daughter just sent me a diffuser and several blends for aromatherapy and I've several separate individual oils to use for pain so I don't have to stop using them.
• She explained that "white ick" can actually be thrush or something else (I can't remember what she said) - it requires getting in to be seen so they can determine which problem it is so they can treat it properly.
• And most importantly, since my chemo schedule is on Thursdays, I asked "who do I call if something happens over the weekend?" to which she explained one MO is always on call 24 hours a day and they are just a call away no matter what comes up (that was VERY reassuring - I was worried about that!).

So a good informative visit. Chemo is now set to start a week from today (hmmmm, will it or won't it???). It's schedule to happen, anyway.

Hope all is well with everyone! As always, you are all in my thoughts and prayers!

KBeee

Hi all,

Back from my crazy work week. The rest of what I need to do can be done from home. Everything went fantastic with the event I was planning, so it is a relief that it is done! Back to the chemo bar tomorrow for #2 of 6.

Lisa, I am sorry that it was postponed again. How frustrating. The reasoning makes perfect sense, but I do not think they fully understand the planning that is necessary and how the plans getting disturbed has a domino effect on people as far as work schedules and such. Hopefully you can do something fun sometime with the extra week.

LiLi1964

Hey KBeee - so glad you had a successful event! #2 just around the corner and one step closer to being done (gee, I think I read that somewhere before.......lol). It must feel nice knowing you will only have 4 to go!

Yea, it is a pain w/scheduling and work with all these changes in my start date, that's certainly true. I don't think they really think about that either, but I wouldn't expect them to. It's their job to get the therapy going when it is safest to do so - they have a lot of patients and they have their goal to get us as healthy as possible in the safest manner so we can't expect them to concern themselves with all our schedules. It's just my unfortunate circumstances, that's all. The Oncology department is very full here and it's just what I have to deal with - would have been nice if we could have gotten some of these tests done sooner - but there's a lot of things in life that "would have been nice". All I really care about is making sure I'm in the best health possible before starting. That's my best bet for getting thru it all with the least amt of SE's.

I'm mostly just bummed about Thanksgiving and Christmas. But I don't want to wait 2 weeks just to get a good holiday schedule - there will be plenty of holidays in my future (God willing) so if this year I'm a little out of sorts, then so be it.

Wish I could do something fun with the next week but right now I have to concentrate on healing. The under arm is really got some pain happenin there! More than I expected. You know, when you have BMX and immediate reconstruction, the majority of pain is EVERYWHERE FROM THE WAIST UP TO THE NECK (all you with the same procedures know what I'm talking about)! Kind of lose sight of where the pain is and where it isn't, know what I mean. But I had in my head it was "in the breast area" where all the pain was and just generated outward. Obviously there was pain in the armpits but was overshadowed by where I thought all the pain was originating. Well, I'm learning now there was more pain IN the underarm than I knew because it's making itself very well known at the moment. Oh well, the pain will lessen and I feel better with that node out of my body and they can properly test it.

Rest up, KBeee - you need your strength for #2!! And best of luck - let us know how you do!

wrenn

You're very patient considering all that has gone on Lisa. I am sure you will do well when it finally happens. Your updates help me to see that we each have a unique experience. Good for you regarding the holidays. My sister had such a hard time changing her Christmas traditions once two of her sons became paramedics and fire fighters working shift work. She adapted now and I am happy to see that she enjoys the get togethers no matter the dates.

KBeee you sure must have started this journey in good shape (mentally and physically) because you handle it all so well. I tend to notice the shit side of life but then I just saw an article in today's paper that that tendency could prove to be genetic.....so I can now officially blame my mother.

have a good day ladies. I am in a good mood because one of my favourite authors won the Nobel prize for literature today. yay Alice Munro.

babs6287

Lisa

Sorry chemo had to be postponed again but it's more important for you to be in the best shape possible before you start! And, as far as the holidays go, I'm sure you'll be fine for them. Remember the book -the little engine that could-if you think you can you will be able to do it. Last year, I was undergoing chemo during all the holidays=Jewish, thanksgiving,and Chanukah. While my family had to deal with brought in food (a first for me since I love to cook) the holidays were still in my house and they were great. Having everyone together made it special so I rallied and felt great those days.I am also lucky my husband was wonderful and did so much!

K bee 2 down 4 to go Yeah!!!!!

Have torun

Babs

LiLi1964

Great news, all.....just got a call from BS and the pathology is back on the node removed on Wednesday (finally they did something faster than they said they would!) and it is NEGATIVE for cancer! Hurray!!!!!!!!!!!!!!!!!!1

wrenn

Fantastic news Lisa. What a huge relief.

Jo6202

Lili, congratulations! Finally some good news and you didn't have to worry all weekend :-)

aviva5675

thats great!

KBeee

Great news Lisa!!!!!' I'm so happy to hear that! You have been so patient and have a great attitude. Your body will be ready, your mind will be ready, and you will do great!

Hahahaha Wrenn about blaming your mother! My mom is very much a pessimist... and has officially driven me about crazy since my diagnosis questioning everything I do that does not match what was done with her cancer 22 years ago. I have found myself sometimes following her negativity, but I honestly think one of the best things to come from this cancer was that I decided the negativity stops here. I've had such amazing support, and have had so many positive things come about. Some days I just have to look a little harder for them!

Chemo 2 was as uneventful so gar as chemo1. I hope that continues. So far, just nasty taste, slimy tongue, and sore throat. I can deal with all of that. One thing I found very helpful is that I kept a journal last round every day about what my symptoms were. That is so nice to have this round as a reference, and was very helpful when meeting with the doctor today. I have already started it today for this round. Unfortunately I did not start it until day 2 last round and I forgot to note that the steroids make it impossible to sleep. It is very clearly noted next month to take Benedryl at night so I get more than an hour of sleep!!!!! I did that the other days 2-3 on steroids last time and it helped.

I hope everyone has a great weekend.

babs6287

Lisa- best news!!!! Yes!!

K bee so glad #2 was uneventful-love hearing that!

Hope everyone has a great weekend,

Babs

LiLi1964

KBeee - glad #2 went well. I like your journal idea; should have thought of that myself but there again is a great aspect of this forum. We can learn from one another. I have a pain journal I use at times....I'll just make some adjustments to it and use it as my chemo journal. Thanks for the idea!

Did you check w/your MO about Benedryl? I had read somewhere (don't remember where) that they might use that as a pre-med to chemo and you'd want to be careful to not use too much. I know you are a paramedic and I don't need to tell you, but I worry about taking any med, no matter how innocent it might normally be, while on chemo.

I've read a lot over the last month about women having problems sleeping because of the steroids in pre-meds. I asked MO yesterday if I had that issue if it was OK to take one of the sleeping pills my family doc had prescribed back when I was having so many issues w/BMX recovery and not sleeping well. She said that was OK (it's the generic of Ambien and I only take 1/2 the dose prescribed because they seem to hit me pretty hard) to use.

Do you know if you receive Benedryl in your premeds?

jbdayton

Lisa Hurray!! so glad you got such a good report on the node. Now you can continue your treatments without the worries. I did have any nodes checked before my neo-adjuvant chemo. The SNB at time of surgery came back clear during surgery and the micro reports did show an area that could have been active but had a complete response with the chemo.

KBeee I am glad # 2 went so well. I kept up with everything chemo related from each treatment including my blood test results, how much water I consumed, if I needed any additional meds, etc. to compare as well as weight, blood pressure and heart rate. I was lucky that each treatment was very similar in tests. I also logged when I felt the weakest and when I what I was able to eat. The only thing that seemed cumulative was each treatment I had longer tongue and taste bud issues.

You can make a game of it with the goal to be just a little better or at least as good as that first treatment. It is also good if you need to take it to a MO appointment if things are progressing worse than you wanted.

Wrenn still praying for you to heal nicely over the next couple weeks and get your treatments back on schedule.

I am moving along I have done 3 of 25 rads and so far so good.

Hope everyone has a good weekend.

LiLi1964

Can those who had AC chemo tell me how long your infusion time was?

I was originally told to expect my chemo sessions to be 4-6 hours; but now when I look at my next appointment it says 2 hours.

I'm trying to coordinate my chemo and PS expansions for same day so I only need to make 1 trip to Madison every 2 weeks. I had sched my expansions for next 2 times but that was w/the 4-6 hour estimate I had been given for chemo; if chemo will only be 2 hours, then I need to resched the expansion appointment.

Thanks!

VintageGal1111

Lili1964

I have only had two infusions & the time was different. The first time I'd already done blood draw so didn't have to wait on that. The second one I had to wait so that was a delay. Plus it was later in the morning, close to lunch & the infusion room was busy.

I would say you should plan on an extra hour, just for delays, checking in/out etc. Good luck!

LiLi1964

vintagegal - I can allow an extra hour but how long did your actual infusion time take (w/pre-meds)?

It's a big diff in times they gave me.....2 hours or 6 hours? That's huge!

honeybair

Lisa, with your pre-chemo infusions your time in the chair should be more than two hours but certainly not six. Some of your time will depend on the infusion rate. I had mine slowed down so I would be more comfortable. The benedryl that I received made me absolutely loopy and very sleepy for the remainder of the day. Then during the middle of the night the steroid kicked in and kept me wired for hours. You may respond in a different manner. Just be prepared for big changes in how you will feel. That adriamycin cytoxin combination is no walk in the park.

For everyone who is going to undergo chemo, I wish you the best. Thanks to the combination of pre-chemo drugs, the days of throwing up are a a thing of the past. Everything is given to make undergoing treatment as comfortable as possible.

KBeee

Lisa- I do not get Benedryl with premeds; just Aloxi and Dexamrthasone. The first meeting with my MO, I ratyled off a list of about 20 meds...Tylenol, Ibuprofen, Benedryl, Tums, Zantac....anything I thought I might need at some point...to see what was ok and what was not. He was pretty much OK with OTC stuff. The thing you have to watch with Benedryl is that some people will take that and then take other meds that have that as an ingredient and end up overdosing. Benedryl also has. minor Ntinausea effect, so it helped with a tiny bit of queasiness and I didn't need anything else. I took a very low dose, and took nothing else...so far I have not needed anything, which I hope continues! When is chemo number 1?

jbdayton- I hope the rads go well, and pass quickly.

Well, it is a beautiful fall day, and I am heading out for a long walk to enjoy the sunshine. I hope everyone has a great weekend.

babs6287

Lisa it's really hard to plan both on the same day. You should at least wait til after the first infusion to coordinate. There were times when I waited up to 2 hours to even get into the treatment room! Plus there were 2 times when they had trouble with the port so it took way longer. Try to do the fill first so you won't have time issues.

Babs

LiLi1964

KBeee - good to know Benedryl has a little anti-nausea - I didn't know that.

My first chemo is scheduled for 10/17. I hope it happens....

Babs - thanks for the info. I'm hearing times all over the place and I think the 4-6 hours I was told was to include everything. And I'm just looking for infusion times (my MO sets diff appointment times for blood draw, her office visit) which can take 1-1/2 hours by itself. So when I get a chemo time and they state 2 hours....do you think that's a good ballpark time frame? I sched my PS expansion times to be about 2 hours AFTER the 4 hour timeframe they gave me. Figured we could go grab a bite to eat or coffee (or go on a scone hunt!) between visits. It's an hour drive to chemo infusion and 45 minute drive to PS (one-way) so it's really an inconvenience to have to travel down there twice if I can go it all in one day. I'll have to think this all over given the info everyones given me....

Jeannine - I hope your rads continue to go well and you can keep ticking them off as one step closer to being done!

I ended up in ER last evening. Nothing bad and I really felt foolish having to go but the BS said I had to and I even spoke w/an on-call nurse at our insurance company (being a weekend) and she said the same thing - you need to get to ER.

I woke yesterday and my right arm had a funny feeling. Felt like muscular pain so I ignored it. Thought it was to be expected given that I had just had surgery. A few hours later I looked and noticed it was swollen; my husband and I measured and sure enough, it was 1/2 more than left arm both above the elbow and below. So, I ignored it some more. Then my better judgment kicked in and I reviewed my discharge papers from Wed surgery and sure enough, there it was "call surgeon immediately is any swelling in face, neck or arm." Called him and was told to elevate arm over the heart for several hours. If swelling didn't go down, I was told to get to ER so they could do US. So I elevated it for 4 hours then called on-call nurse because I didn't know what hospital I was supposed to go to (we have an HMO and my BMX surgery was done at one hospital but all the phyicians and the surgical center I had Wed outpatient surgery at were at UW facilities) - she said go to UW. Of course that just made my not wanting to go even more so - UW is where EVERYBODY goes and I could imagine the wait we'd have. So I asked "what is the big deal here? I'm assuming it's just lymphedema starting and I dont' think there's any emergency with that..." to which she replied "that could be the problem but you had surgery in 2 areas and now the arm is swollen. That tells us you could have a blood clot and given where those 2 surgeries were, if a blood clot is there and breaks loose it does not need to travel far to get to the heart which could be deadly". OK - that got my attention. Still felt like a fool at ER because of swollen arm!

Of course, US showed no blood clot. They did some labs and everything looked fine so I was sent home and told to f/u w/family doc on Monday. 5 hours in ER on a Saturday evening......but I guess it made the docs feel better I was seen (and hubby, too) - it just seemed like a little over-kill to me but better safe than sorry.

Hoping everyone has a great day!

LiLi1964

Ladies,

I know some of you are being seen by PT for lymphedema - can you tell me how that's going and what exactly they do for you there? I'm sick of missing so much work for dr appointments and I know my fam doc is going to send me to PT but I want to avoid it if possible. If there are simple exercises I can do that I can find online I'd rather do that. I've been to the lymphedema threads in the past....I'd rather hear from you gals.

Anyone w/a Power Port. Just and FYI - I was told to always carry that card we all get when we have port implanted and to make sure all medical personnel are told I have a port. Since I know I'll forget....they also had a wristband in my packet that says " Bard Power Port" as a reminder to me to remind medical folks I have one, so I wear that.

OK - the ER folks really liked that and nobody had ever seen a patient before me have one. They said they wished everyone would wear the wristband if they received it because it tells them all the need to know (basically the type of port is all they need to be informed of). They also said most patients they get who have a port have no clue what kind so if they wore the wristband, the medical folks would know all they needed just by looking at it (not to mention if patient is in some shape where they cannot talk - the wristband would be a HUGE help to them).

So just wanted to pass that on. Granted, it is an ugly wristband but if it makes things safer and faster for the medical profession when they need to know....then I'm wearing it!

babs6287

Lisa

It's always something!

Babs

Jo6202

Lisa,

Wow what a weekend you have had. So glad you didn't have a blood clot. It was good you had it checked out. We certainly don't want to lose a sister to a blood clot! Now try to rest the remainder of your weekend. Good info about the port and bracelet.

KBeee

Lisa, So very glad to hear it was not a blood clot. A friend of mine from here who had BMX 2 days after me and has had a rough recovery did have a blood clot last week, and was critical for a while. Definitely glad you got it checked and so glad it was not that; it is not something to mess around with. Hoping all goes as scheduled for your chemo on Thursday, and that all goes well.

honeybair

Llisa, good to hear you did not have a blood clot. I did develop one behind my left knee after going on Taxol but the first US did not detect it. My leg and ankle stayed swollen so i was sent for repeat US which revealed it. I am now on a drug called Xarelto, the newest blood thinner out. Sorry about your lymphedema. You haven't even begun chemo and are having all these setbacks. My heart and prayers are with you. I know you are anxious about what your chemo will bring. That is only normal. It is true what they say. "Cancer sucks."