Starting Chemo March 2015

shaz101

nice to hear from You Lee. I hope you recover quickly.

Katy, I'm So sorry to hear how bad you're feeling. I also heard so many times... aren't you glad chemo has finished - when I am still trying to recover. They think it's like a magical button that is pressed and we are all ok again. I'm so glad you ranted! you need to do that and I hope it helped.

I had a big week. I had the neurologist appointment on Tuesday. Because I'm still having migraines (4 this week) they want to wait until the chemo is out of my system before they do too much. My next appointment is in 3 months.

On Wednesday I went to the lymphoedema and laser clinic. I'm now the not so proud owner of a compression sleeve! she did some laser treatment and told me to wear the sleeve from waking until I go to sleep. I have another appointment next week for a massage. Lymphoedema has made me very angry and frustrated. 😠

On Thursday I went to work for a meeting to discuss a project I need to work on and my treatment time lines.

I was exhausted by the end of it all. Travelling is the worst. The lymphoedema clinic was 2 hours drive each way.

On a good not I received some lovely cards from katy and diane as well as some beautiful information and photos about Oregon. I really needed this lift. Thankyou ladies xxx

I hope everyone has a good weekend.

Trvler

Carrie: So thrilled to hear about your clean scans! Can you tell me what specific scans that you had?

Katy: I love seeing the pictures of those two together. It just amazes me. I guess maybe it is because Tutti was a kitten. How can anyone, even a dog, resist her adorableness? But the side by side thing is precious. I hope you are feeling better today.

I was also curious about the rads. I went to see one RO and she said I needed it. But I was not (and still am) not so sure. Special K's post is helpful. You can call me a cynic (because I am) but I don't always trust that the doctor has YOUR best interest at heart. NONE of the criteria that K mentioned was discussed at my visit.

This has been exacerbated by the whole NOLA surgery debate with my doctor. BTW, I get far more useful information for K than I do from any doctor.

SpecialK

trvler - glad to help! About the time I received treatment for positive nodes there was a shift toward less ALND surgery and using radiation in an attempt to effectively treat while risking less lymphedema and other side effects. This was 2010-2011 and I was aware of this shift toward leaving the axilla intact and reducing the LE risks, but I became more comfortable with surgical removal rather than relying on the possibility that adjuvent chemo/radiation could do the job, particularly in hindsight once additional cancer was found in post-op pathology after the ALND. I was also unusual in that my ALND was five weeks after BMX because my SNB was initially declared clear in the OR due to only having 20 IST, so there was a LOT of discussion before I agreed. My BS is a progressive guy - one of the pioneers of SNB and nipple sparing mastectomy - but my Her2+ was his (and my MO's) rationale for ALND surgery and no rads for me. I did not have confirmation of any positive nodes prior to either surgery by either palpation or MRI - my pre-surgical MRI was clear even though the additional node further up the lymphatic chain was the size of a stage I breast lump. I don't image reliably, my 2.6cm palpable breast lump was not seen on mammogram either. Under current NCCN guidelines I would have fallen into "strongly consider" category, but nobody even knew for sure that I had positive nodes.

I think of other people's comments regarding being "done" with chemo kind of the same way as childbirth. For those who have been pregnant for nine months, and then given birth, were you back to your old self the next day? Nope, you either just squeezed a fairly large thing through a fairly small spot - or had that large thing surgically removed! There might have been grunting, screaming, bodily fluids, panting, maybe some bad words, etc., and afterward you're walking like John Wayne for a period of time. It can take months to lose the weight, and many are physically altered afterward. Some breeze through it - others not as much. Seems kind of similar to me.

shaz - did you get some kind of hand protection with your new sleeve? If you wear a sleeve without a gauntlet or glove you can force swelling down into your hand which can be very hard to get rid of. I use a gauntlet, which I have found easier to fit than the sleeve, so could be ordered off the internet.

ninjamary

Katy,

Ugh. I'm so sorry to hear you aren't feeling well. I hope you mend back from SE very soon. I feel some of your pain and I'm having a hard enough time with that! Love that Tutti and Jack get along so well. It's adorable.

I've basically announced to the world my end chemo date (dammit). Now everyone wants to make plans with me the following week. I've found that taxol has become very cumulative. I'm losing feelings in my toes (the wee wee piggy), my eyesight is shit, the hot flashes, and this last chemo I had (thursday) I felt positively nauseaus. In all honesty I should not have driven myself home. Looks like I will need a companion for the final 3. Yes, will you please drive me to chemo and sit there while I read a book then pass out. Boring. I also hate that infusion room with a passion. I get depressed upon entering. I guess that's part of the reason I go to sleep...avoidance.

Here's a picture of Felix looking for some lovin. He tried to lay on the keyboard and had to settle for the desk. He's bummed. At least it's not Smokey Oscar...he's that dicky cat that has to knock over everything on a surface that he occupies.

Carrie37

Allison, I had a bone scan as well as a CT scan of my chest, abdomen, and pelvis. I suppose that rads has been recommended for me since my tumor was 2.5cm and located at the 2:00 position which is close to my chest wall and was/is close to the skin. I've been told they are being aggressive since they believe my cancer to be curable. not sure what to think of that statement anymore.

SueH58

Woke up on this beautiful sunny day to a yeast infection. How pleasant. Got a script called in for the pill. 

SpecialK - do you know if chemo played a hand in this or is it just a timely coincidence?

rleepac

So mine was <5 cm with 1 node and dirty margins. BUT I'm having BMX so that should take care of the margins issue. I think my BS said she is going to take my case to the Tumor Board again about the rads issue. I don't want rads of course but if I have to, I will.

molly1976

I was talking to a lady at radiation today who had a tumor less than 1 cm and a BMX but was doing radiation. She thinks it's because it was so close to her chest wall. It's really surprising to me how many people I run across at my hospital who don't know all the details of their diagnosis and treatment. I think we are a well-informed bunch!

Jackbirdie

Ninja- Felix the Cat is so cute! It is so funny how cats always want to lay where they are in the way. On the newspaper you are trying to read, for example,.,.. So funny.

These two do keep me entertained. I'm hoping for a better day today. Loving all the useful comebacks.

It is very concerning that the whole rads issue, like all the other bc issues, don't appear to enjoy consensus among medical professionals. Makes me wonder about my situation. They told me not necessary, but I think mine was 2 o'clock....arrrggggggghghhhhhhhhhhhhh

SpecialK

Dirty margins can mean margins of removal with lumpectomy, but with mastectomy would be chest wall proximity or skin proximity - thus the need for rads.

jackbirdie - location without margin issues doesn't factor as far as I know, the 2 o'clock position can mean a lot of things without knowing how large the breast was - it could be 2 o'clock but with a 1cm margin all the way around in one person, but 1mm in someone else.

sueh58 - I am not sure what you are asking - can you clarify?

Jackbirdie

Sue- if it's any help, I had a skin rash that was determined to be a yeast infection, it came twice, each time after a chemo infusion on about the 4th day. They gave me a fungal cream (nystatin) for it. They believed (MO nurses) it was chemo related. I guess you will never know. If you are already prone to yeast infections it could be coincidence.

On the other hand, it was my observation that with my own body, my worst and most reliable chemo SEs were in areas or systems in my body that were already weak links. For example, I am very prone to upper respiratory infections, which almost always start with a strep type throat, and swollen glands. Often this progresses to bronchitis or pneumonia. Sure enough, with each and every infusion, I got these symptoms like clockwork on day 4, and finally, weakened by all of this, after chemo 4 it did advance to pneumonia.

The first antibiotics couldn't clear it, and chemo 5 had to be delayed.

This all may be purely anecdotal, but it is my personal explanation for why SEs vary so much from person to person. You can't explain them in a vacuum. You have to look at the environment they are at play in, one's own immune system. They find the weak spot, and attack from there. It's like freaking biological warfare. For sure at least war.

Now that you've all been treated to my entirely unscientific and useless theories, I will tell you I still feel like crap today, with the added pleasure of nausea for some reason. But overall, on a scale of 1-100, an improvement of a couple of points. Thank goodness for furry cuteness and Wimbledon. Distraction requiring no effort or input from me.

Hope all of you are doing ok. Allison, for some reason I have been thinking about you a lot. You have been quiet, and I'm a bit worried about you. Please know that whatever is going in, I'm sending you love and support and hugs. And what little mojo I can spare. I hope I am wrong, and you are simply busy and taking advantage of the cancer center's peripheral treatment offerings, getting massages, and not worrying.

Bekah, I hope you get some magic from the bracelet. You certainly deserve a break.

ninjamary

ok now my vent. My family is doing Ulster Project. Basically we host a Northern Irish teen in our home for the month of July and we give up most of our month (vacation, sports things like that) That is fine. I've got that. Well we have to host these potluck dinners. I hosted the first one (it's only 4-5 families in each group) at that point I was "wig" girl so I don't think it was too obvious at that time that I had cancer. I'm assuming the entire group (there are 16 families) now know that I have cancer. I think wearing the scarf and do-rag gave me away. Fuck the wig...I'm sick of it.

Well potluck #2 is today with the same families as last time. Do you know that not one of those families offered to host it at their house! I waited until Tuesday to offer my home...again. Granted most of the others are bringing the main, app and desserts. That is all well and fine. I have spent the day after Thursday chemo cleaning, grocery shopping (husband is cutting the grass) and making a salads. To my credit I have not pulled the "cancer card", but in this instance I had every right too. I wasn't too pissed off about it, but now I'm drenched in sweat, haven't taken a second to rest, my eyelids are twitching and I feel like I'm running in place. I just hope they all leave early, or better yet I might just check out at 8-9 and let my husband deal with them.

Carrie37

Ninja, that would annoy the crap out of me!! I say when you are tired you should just excuse yourself and let your DH deal with the guests. Maybe tell him ahead of time so he knows what time your done. Good luck!

Jackbirdie

Ninja- you deserve a vent. You need to watch out girl! Do NOT OVERDO. I would PLAN, as of now, to check out early, and let your husband explain and I hope he does so in a way that makes them feel very guilty. You are the last person who should be sticking your neck out right now.

Starting this minute, please get out a piece of paper, physically or mentally, and put YOURSELF at the top of your priority list. You and your cancer card. This is bullshit and I am pissed off that this happened. Don't let it happen again. Hear?

Leighrh

I have a friend at work who is my go to gal... she is hilarious and the ying to my yang..... She tells me all the time that if she were me, she would wear some kind of big pink sash around her all the time and do whatever she wanted.... she said if she felt bad and wanted to leave, if anyone even looked at her she would just point to the sash..... LOL!!!!! But I feel ya Mary.... I tend to do the same things... never let up.. just keep acting like there's nothing wrong.. like I can do it all! But I agree with everyone..... just sit back and relax at your potluck... park yourself on the couch and let hubby take over and have him tell everyone that you've done enough for today!

Jackbirdie

good morning Lee-

Jack and Tutti sending a smile

eheinrich

They are so cute I almost exploded into rainbows!!

Trvler

Katy, with all you are going through, you are thinking of ME? You are so sweet. You touch me. I am doing pretty good. Both kids are home now and we are trying to implement some better structured discipline but it's hard. My older daughter is fighting it more than my younger one. We are using something called Magic 1-2-3. My daughter read the da$@ book. lol. I haven't even finished it yet.

What is going on with the move, Katy?

Mary: I am sorry about both things…they way you feel at chemo (I can relate on so many levels) and your icky potluck people. I can't believe what selfish a$$holes people can be sometimes. Hugs and leave whenever the F you feel like it.

I am trying to put together the plan for watching my kids when I am in NOLA and am somewhat disappointed that all of the 'we are here for you' people are not being so much here. But I can tell my husband is trying really hard to be supportive. He sucks at the emotional stuff but he has a huge amount of energy and helps where he can.

Jackbirdie

A- the house thing is plodding along on schedule. The ball is in the bank's court now and we are waiting for an appraisal. Closing tentatively scheduled for 7/29.


A whole lot of people, in different groups, have been coming forward with offers to help. Packing, unpacking, actual moving, and the Furry Friends (Jack's dog therapy group) have organized a work party to dig up the more valuable things in my garden.. It's quite overwhelming. I hope they all show. I know some won't. But just the offers have made me feel very cared for.


I know I'll still be in no shape for much physical work or emotional stress, so I have my hand OUT, haha.


I know I don't understand the first thing about having children, and I cannnot imagine how difficult is to have all THAT on top of all THIS. I only have to worry about me. So naturally I have a bit of mother hen leftover for you, my dear. It sounds like you are doing a great job in an extremely difficult situation.

pboi

Jack and Tutti pics always make me smile!

Mary...sorry about the potluck. Please don't overdo it! Let others do the work as much as you can, and absolutely leave when you need to rest. People will understand, and if they don't...well then oh well!

Allison...Is Magic 123 a discipline book? I need some discipline around here. My daughter has been giving me such attitude...and talking back so much...sigh

PB

Trvler

PB: Yep. How old is your daughter? I would definitely read it. I knew this was a mistake when my husband did it but I did/do it too and that's try to reason with them like they are adults (and reasonable). lol

Trvler

Aw..that's sweet, Katy. And if I lived closer, I would come and pack some boxes for you and that's saying a lot because I suck at packing.

pboi

I have twin daughters, who will be 10 in about 2 weeks. One who is 10 going on 13...it feels like.

PB

Trvler

I would say get it NOW. lol. The sooner the better. The older they get, I think the harder it is. I think my daughter who will be 10 in Oct is actually handing it better than my 11 year old. I wish I had gotten it years ago.

pboi

Thanks Allison, I NEED it now. Thanks to Amazon Prime, it can be here in 2 days!

PB

Trvler

Yep, order the DVD, too. Is there a dad in the picture? They won't read the book. It says to buy the DVD because the dads won't read the book. It was right.

Italychick

seventh Herceptin done today, 10 to go. It's like counting down a prison sentence lol. This one wasn't bad at all, went for a bike ride after.

Allison, I need to get that book too for my grandkids. They are a willful lot, but love them to pieces!

IndyGal35

I'm doing ok three days post-surgery. The Vicodin is making me itch like crazy. The PS told me to try Benadryl, and he will give mea different narcotic tomorrow if I'm not getting any relief from the itch.

I still hurt, but I learned quickly that being a pain warrior is a horrible idea. I was also shocked by how "good" my poor boobies looked compared to what I was expecting. They are lumpy B-cups now, but I felt thankful instead of devastated when I looked in the mirror for the big reveal.

Thanks for the cute animal pics. You all know how much animals rock my world. I swear that they expedite healing!

Back to bed I go. Keep sending love and prayers for relief from the pain and itching. XO

Zzzzzzzz.........

pboi

Thanks Allison! Funny about the DVD! Didn't know there was one. I'm more likely the one to watch the DVD, and my husband, an avid reader, to read the book...lol.

I think the book said something about ages 2-12. My son is just about 7. I have no discipline issues with him, but probably a good idea to start now with him before problems come. Thanks again for the recommendation!

Lee - praying for you, that the pain and itching go away very soon..

PB

rleepac

Ok. I guess I can see a difference now...