August 2013 Surgeries

KBeee

Lisa, I just want you to know that you are in my thoughts and prayers today.  ((((HUGS))))

Be sure to post how you're doing so we can help you through this.

Jacquie, I am doing TC chemo.  I have had just one treatment, but so far, it is veyr doable.  I am also young and am in good physical shape, so that definitely is helping!

honeybair

Attempted to sleep in my bed last night and had to get up and move to my recliner to finish out the night.  I am so sore today that I can hardly move.  What is it with sleeping in a bed and mastectomy pain?  The pain is other places as well.  Back to the Tylenol.  Tomorrow is simulation day for my radiation.  More joy ahead!!.

LiLi1964

Well, no chemo for me today – all the prep mentally and physically….all put on hold.

The PET Scan is picking something up in the right nodes (this is the side where my sentinel node tested positive but was though to be "incidental").  There is definitely something going on there as it lit up quite clearly on the scan.  The problem is this - the PET Scan cannot tell you if it is showing increased cell activity because of cancer or from inflammation.  Because I had a very long recovery, they say it is possible it is still inflamed; however, everyone (Radiologist, Breast Surgeon, Oncologist, and Radiology Oncologist) are in agreement that the PET Scan is concerning.

I was sent from the UW Carbone Cancer Center over to another clinic to get an immediate ultrasound - the thought being an ultrasound might give us more info if this was inflammation vs cancer; no such luck - at least not as I sit here right now (the Breast Surgeon and Oncologist were to meet this afternoon to discuss further).  Radiologist was encouraged to see that at least the large node they could get a good pic of shows "fatty" type tissue whereas it wouldn't necessarily look that way if it was cancer.  Key word...necessarily.  She simply cannot determine.  After the US was taken she spent quite a bit of time on the phone w/other doctors on my medical team to determine what the best course of action is to be.  From when I left the clinic....we are simply going to move ahead w/chemo and not biopsy this area at this time.  IF it is cancer, chemo will shrink it and I'll have lymph node dissection surgery after my chemo (in 4-5 months).  They will do a follow up ultrasound in 3 months to look at nodes to determine if they shrunk (meaning they ARE cancer) and then surgery to remove OR if they look the same...then we'll know it was just continued inflammation from surgery.

OK - EKG also showed concerns (I swear this never ends!).  The normal output for the heart is 50-75%.  Mine is at 50%; therefore it could be very dangerous to use the chemo regimen we had planned for the aggressiveness of my cancer.  I may still be able to if the Cardiologist deems he can have me take sufficient medications to protect my heart from the Adriamycin.  I see the Cardiologist on Wednesday - apparently all decisions regarding how/what chemo will be used will be determined after meeting w/him.  They do have an alternative chemo drug they can use that does not weaken the heart muscle; it's just not as effective as the Adriamycin.  This is how it was put to me:  We don't want to cure you of cancer just to have you die of a heart attack.  Yeah, what can you say to that?  FYI - she also said the 50% could be simply "my makeup - that's what it's always been and we only know about it now because we checked it prior to starting chemo".  So this is all very "up in the air" to me........I just am following what I'm being directed to do.  I meet w/Oncologist again next Thurs bright and early and will find out how we proceed at that time.

So very tiring day and not what I wanted to hear or deal with.  But it is what it is and like it is always said….one day at a time. 

I’ll spend some time this evening catching up on other posts – I just wanted to let everyone know what happened (and what did not happen) today for me.  

Hope everyone is doing well!

aviva5675

oy vey Lisa!

While perusing the boards, don't over do- sometimes I find I have to take a break from this all, and you have had quite the day.

KBeee

Lisa, I am so sorry for the delays and complications...how frustrating for you. I do know that there are some women on TC who are triple negative. My doctor is involved in a clinical trial comparing AC-T to TCx6 for high risk breast cancers. I know there are some triple negative women in it. I am on TCx6. I am not triple negative, and am not it the trial because my tumor was 1mm too small. Though TC has not been proven over as many years, early trials sowed it as effective or more effective as AC alone, with less long term effects. It is a very doable regimen if that is the route they go.

poodle_mum

Lisa - sorry to hear things are taking a different route than planned but as you always say to us, in the end, it'll work out. Keep your chin up.



I think all of us have gone into this with as much info as we could get but in the end we've all faced issues that were unexpected.



I only signed up for preventative mastectomy due to family history. I came out with a diagnosis of DCIS (Thank God low grade), lymph node biopsy that I wasn't expecting, seromas, a hole in my rib where for lack of a better term "my under-boob" used to be, painful therapy no one told me about (which again thank God is working well on the one side), lack of energy, no interest in food, consistently low bp and hospital visits at least once a week - sometimes two or three.



My biggest concern before was "they're lopping off my boobs." Now it's basically "let's get through this day without any troubles."



I wish we could go to sleep for six months and wake up perfectly healthy and with nice looking boobs. I started feeling down in the dumps because I was looking at all this mess that used to be two intact girls (while not what I would have liked them to look like - but...) and thought to myself - "really, no one is going to want these. " My girlfriend says they look fine and I've often wondered if she's saying that to make me feel better or if in fact it doesn't bother her. I always said that if any future partner had to go through bc, it would never change how I felt about her. But now being on the opposite side, I can't wrap my head around her really wanting this (I know I'm extremely grateful for what I have as many ladies have not had that choice and their journeys in that arena are significantly more involved than mine).



Sorry for the depressing post, I guess I'm just frustrated and want my life back.



Chins up ladies, I know you guys have helped me so much the past month and you are all in my thoughts and prayers. I guess no matter what kind of day it is, we need to step back and say "I'm a fighter and I'll come out on the winning side. " I want to thank you for being my "teammates" as unfortunate the situation is that brought us here.

wrenn

Hi everyone, Just got home from hospital and am pretty high on ativan (needed it for dressing change) so although I read all the posts nothing sunk in past the paragraphs. I will have to read again tomorrow.

Lisa, I am so sorry for the delay. I can't believe it. You finally got to the day and that had this happen. As if surgery and chemo weren't hard enough to handle there always seem to be delays and changes along the way. argghhhhh.

I have a massive infection and the infection that was deep in my chest burrowed a tunnel to the surface where my incision was so now I am having this 7cm hole packed with long stips of dressing. It doesn't hurt but I can feel it deep in my chest and back and it is worse than scratching a chald board as far as creepy. Back on antibiotics and dressings (still no showers) and not sure what it will do to chemo schedule. The silver lining is that I have a new team. I refuse to go back to the original surgeon who dismissed all of the comications and refuse to go back to the hospital. I spent 4 and a half days in a good hospital with attentive staff and am blown away by the difference. I am really fed up that it is such a mess but am hopeful that the problems might be solved finally. I wil follow up with the new surgeon next week.

Thank you for the support and good wishes. I was reading on my phone and thanks to the iOS upgrade the battery was dying fast so I didn't get to it much and was unable to post without going through an ordeal.

I will try reading again tomorrow with a clear head and Lisa I hope you can have an ok evening given all you are going through. grrrrrr.

One more thing...helped me put my frustration in perspective. The woman in the bed next to me was diagnosed last year with IBC with bone and brain mets and this week discovered to have a bowel obstruction. Yesterday they removed part of her bowel and installed a colostomy. She now has bowel mets and woke up still being upbeat. She actually looks good and will be in hospital 8 more days to recover from this major surgery but will be taken by ambulance to the cancer agency in about 6 days for her chemo treatment which is part of a study. I think she will make it.

ok. goodnight special women. xo

babs6287

Wrenn -glad you're back on the boards and that you switched doctors- to one who listens.  This process is hard enough but to have a dr that's dismissive just makes things so much worse!

Lisa-as Rosanna Danna said "It's always something"  Hopefully this is only a small blip  in your journey and you will be able to start your chemo soon.

Honeybair-the simulation for the radiation is one of the easier things for us.  I personally didn't love when they did the tatooing-I never thought I would have a tatoo!  Oh well!!!!

Poodlemum-wouldn't it be nice to have our old lives back!  Just remember we're all here for each other and have found so many new friends here-how lucky are we???

Tomorrow I fly down to Fla for my sister-in -laws wake and funeral.  The silver lining in all of this is that my entire family will be in one place- a rare occurance!  The only one missing will be my daughter. She couldn;t get in from Europe now-her job has her traveling.

So, wishing everyone a great weekend!

Babs

LiLi1964

Wrenn – I am soooooo very happy you are well (although perhaps a little buzzed but that’s OK!) and on your way to an actual recovery.  Thank God you have a new team; it sounds like they know what they’re doing and you are now in good hands.  I wish for you speedy recovery - you deserve a shower!!!!!!

That “nails on a chalkboard” feeling – I think you are explaining that terrible tight-taped up feeling I had been having that was driving me insane and was unable to wear foobs or even have any clothing rest on my chest.  And it all went away as soon as those dang tubes were unwound from inside my chest – so hoping that is what is causing your feeling that way and it goes away when the packing can be removed for good. 

It brought a smile to my face when I hopped on this morning and saw your post – I’m so happy you’re doing better! 

Babs – I hope and pray you have a safe trip to Fla.  It’s strange, isn’t it?  Seems like that in most families that the only time we all get together is at a funeral – and even though we all realize it, it never changes anything.  We still don’t make the time to get together to celebrate together with everyone alive…..life is strange in so many ways.  It is too bad your daughter can’t make it; but it was nice that you had her home to aid in your recovery. 

KBeee – I believe my MO is considering the Taxotere if the Adriamycin cannot be used.  I don’t know these drugs, don’t pretend to understand them, and it’s very unusual for me to say that in anything having to do w/my medical care.  I’m usually one who wants, no…needs, to know everything about everything in every step of my care (it all stems back to some trust issues years ago when I was naïve and thought the medical profession knows and does what’s best for the patient – well, not always.  We lost our son at age 5 weeks because I trusted the doctors during my pregnancy.  I should not have; but found that out too late).  But here w/chemo….it’s all too much for me to wrap my head around.  So I stay away from reading too much online or even at these posts and am counting on my medical team – I’m trusting in them to do what is best for me….I have to because it’s too much for me to understand.

I’m unsure how the Cardiologist is going to determine what chemo gets used.  She said he is very interested and is doing studies on how chemo affects the heart.  I don’t know how taking any blood pressure medication could strengthen/protect my heart so that they could still use Adriamycin (that’s what MO said he might do); I don’t have high blood pressure.  I have had no symptoms of anything w/my heart but have been being treated for high cholesterol for about 7 years – very well managed w/Lovastatin and diet.  Only time my BP is raised is when I’m in clinic w/excruciating headache and that can be attributed to pain – no other times is BP EVER been a problem.  So I don’t understand all this either…..and after my husband and I talked last night we couldn’t recall that she was going to decide chemo med based on Cardiologist visit.  We seem to recall she was talking about making that decision based on what US found…..so I’m just overwhelmed when I stop and think about it so I stop even thinking about it.  I’ll just follow thru what they tell me to do and put my trust in them and hope the outcome is good in the end.  

I’ll freely admit I don’t mind if I don’t have to do the AC treatment; it worried me about the issues w/the heart just because there is heart disease in my family.  But at the same time I want whatever chemo is best to kill whatever cancer is still lurking.  In fact, yesterday was the first time I heard “metastasis” in reference to my cancer; Radiologist brought it up stating that is what my final pathology states in relation to what they originally found in sentinal node on right side.  That word scares me so I want whatever chemo is needed to make that word go away!  But like I was told yesterday – they don’t want to cure the cancer just to have me die from a heart attack – so I guess I’m going to have to face having percentages put in front of me again and having to make difficult decisions.  I hate all this – nothing is simple here and I thought we were on a pretty standard treatment plan and the “toughest” decision I had to make was chemo or no chemo. Which was an easy decision based on the great reduction of recurrence rates I would see doing chemo.  Now it looks like “protect the heart” vs “kill the cancer”….I’m not a good gambler and don’t want to have to make that decision.  I’m just stopping there…..I’m sure everyone can see my inner conflict and I don’t want to deal w/it at the moment so I’ll leave it all there. 

I just want to move forward, already!  I’m tired of waiting and we’re getting into the 8 weeks post surgery timeframe and given the aggressiveness of my cancer….I don’t want any more delays.  But I understand 12 weeks is the absolute cut-off time and chemo really must begin before that time in order to be most effective.  And obviously I’m very concerned that there is lingering cancer ready to do me more harm in the right nodes and any more delays might compromise my outcome….. 

On a brighter note – I must say I am very happy you are tolerating your first round of chemo well!  

Honeybair – I am truly sorry you still can’t sleep well.   It’s so important to sleep – might you consider a sleeping aid to try to keep you sleeping?  It’s very frustrating but the body must rest to heal and you don’t sound like you rest appropriately on a regular schedule.  I don’t know if you read my previous posts on this.  I used sleeping pills for 3 nights and that was all I needed.  I finally rested properly and have had no issues sleeping naturally after I stopped taking the pills for 3 nights.  It might help you….. 

Poodle-mum – yes, it would be nice to wake from this nightmare and we would all have our lives back with healthy breasts.  Unfortunately, our new “normal” is what we have and is what we must deal with.  It’s tough at times, but this forum is so helpful in giving us all a place to vent our frustrations and the good friendships we’ve developed helps us get thru the bad days and brings the “fighter” back to us to see things thru and move forward.  Our bodies are not who we are….it’s what’s inside that makes us who we are and that’s what is most important to remember. 

Jacquie – congrats on graduating to a regular bra!  Nice getting out of that vest, isn’t it! 

I can’t speak on the Oncotype test as I didn’t need it.  And know very little about it but it sound like you have a difficult decision to make.  It’s good to take your time and do your research before making any decisions.  Oh, and sorry to hear you need to have the colonoscopy….I feel for anyone going in for THAT test!  I’ve not had to have one yet, but my husband has and it doesn’t look like a very pleasant test to prep for….so I feel for everyone having to go thru that! 

I hope everyone has a pleasant day and in good spirits!  I’ve got my wig shopping this afternoon…..I’m not in the mood but whatever. 

wrenn

Lisa, I so badly want them to figure out your treatment and get you started. It is torture what you are going through. I am going to be using chemo that doesn't affect my heart because of a family history and I worry a bit about the effectiveness but I worry more about heart disease. Sadly we have something else in common I see. I too lost a son but mine was not because of the medical system. If it had been I would be so leary. I am so sorry for your loss. It never goes away does it?

I hope your treatment gets started, goes well and that you get good results soon. This is all so hard.

I will be back to read more after coffee. I had a great sleep in spite of being afraid to go to bed for fear of another eruption of blood. Dressing still looks good. I hope everyone has as peaceful a day as possible. 

ndgrrl

Wrenn,

I noticed you said you were going to do a chemo drug that does not hurt the heart. Before I found out I was not going to need chemo ( oncho score) my onc told me about a clical trial- its a stage 3 one I think- that I qualifed for - but the trial is using two diff drugs - the one that hurts the heart is not part of it.  The onc told me that studies have shown and that is why the clinical trial, that the drug that hurts the heart is not always needed. They give the other two that go with it instead. I wish I could remember their names, but at that time I heard the word chemo and brain froze.

Best of luck

wrenn

Thanks ndgrrrl. It is so good to have a place like this to come to with so much information. It makes the anxiety level go down. thanks so much for your reply.

Pam358

Poodle_mum - I guess until your recent post I hadn't realized that your "medical adventure" for lack of better words started out with a preventative mastectomy. Such a change in circumstances - YIKES.  Glad to hear that the surgeon has increased his vocabulary, especially to include kudos to you and your girlfriend for your great medical dressing skills. 

Wrenn - so glad to have you back and better yet that you are on the road to recovery.  The infection and the hole packed with dressing sound tough to deal with but it also sounds like your new surgeon is on top of it! Happy to hear you got some sleep too!

JennH8

Hi Ladies!  I've been MIA for a bit but haven't stopped thinking about you all.  Sorry to read some of you are having problems.  If only this could go so simply and easy for all of us.  I'm a bit over a month past my surgery date now and things are healing up well.  Docs are happy with the results so far and so am I.  I'm quite enjoying my smaller boobs (I took a reduction.) although my clothes aren't fitting quite the same, so will have to get some new things.  Oh darn!   

I did get a call from my oncologist today.  She let me know my Oncotype Dx score came back high so chemo is in order.  I was pretty much expecting it but hearing it is a whole 'nother story.  She's telling me 4 treatments over 12 weeks, so compared to some I know that's nothing.  Being that I've done chemo in the past though I am not looking forward to it.  Well, who does.  Anyway, I will find out all the gory details next week.  In the meantime, trying to get all the yucky feelings of all this out so I can focus on the positive and the fact that 2014 will be a good year! 

Love and hugs to my pink sisters.

Jenn

KBeee

Lisa- I sure hope that you get answers soon.  I am so sorry to hear about your son, and what happened.  I learned the hard way as a child when a doctor messed up...and I ended up in the hospital for 2 months as a result...that no one will advocate for me other than me.  If they do put you on a TC regimen, it is doable.

Babs- I am sorry to hear about your sister-in-law.

Wrenn- I am so glad to see you back!  I am happy that you found a new surgeon.  I hope you are on a better road to recovery and that you'll recover quickly.  The trial that ndgrrl may be referring to is one they were going to put me in comparing TCX6 vs AC-T.  I did not qualify for the trial because my tumor was 1m too small, but I am doing the TCX6.  Most people actually just do TCX4...wish I was doign that, but I'll just have to dig deep and get through those last 2 when the time comes.

Poodlemum- I hope you are having a better day today!!!

Honeybair- I hope you are getting some sleep!

JennH8- It's good to see you back, though I am bummed for you that you need chemo.  I am also on TC.  I have TCX6 instead of 4, so you will start after me and finish before me!  I have had one treatment so far nad found the side effects to be manageable.  I have continued to walk 4-5 miles each day and have not had any vomiting.

JennH8, Lisa, Wrenn, and anyone else who may do TC, there is a board on the chemo  boards called Starting TC February/March 2013.  Even though it says Feb/March, it has continued and just adds new people as we begin.  It has been a lifesaver as far as questions.  Come join!

For me, I still have done pretty well.  I am feeling great one week out from chemo.  My biggest issues have been a raw throat which makes it a challenge to eat (though I can eat) and abdominal pain, which today also included blood in the urine.  I went for a urinalysis today to check for  a UTI.  I was supposed to call this afternoon to get results.  I called 2 hours ago and the nurse has not called me back...go figure.  One of the side effects of Cytoxan can be blood in the urine because of bladder damage, and I am more concerned about that than infection...but they did not even mention that!!!!  If they don't call me back, I'll probably call again on Monday to have a little chat about that.  I wish I had asked more assertively about it when I was there today, but I had not double checked my facts before I was there.  I actually was there to get a vaccine as part of a clinical trial, and discovered the blood in my urine while there...interesting timing...so I did not have time to do my "research".

LiLi1964

Quiet day, ladies!  I hope that means all is well. 

I’ve been online most of the day – having real emotional issues (again) due to all this added stuff thrown in my lap a couple days ago.  Handled it well when I got the news – not so much yesterday or today.  I’ve spent quite a bit of time at the Oct 2013 Chemo thread getting advise and info related to my PET Scan and EKG.  I have to face what’s in front of me so who better to turn to?  The medical folks seem to not give all the info we should be getting so I had to turn somewhere – and it appears I need to do more research on the AC-T and TC-T….hearing/learning stuff that makes me nervous and I’ve no clue how any of this may eventually damage my heart or other organs.  Wanted to stay away from research, but feel I have to at this point.  I know it is all very individual and cannot go on what others have experienced or read….but it is so much more info I was aware of I think I best research some on my own to formulate questions for Cardiologist and MO this coming week. 

It feels to me something like this:  I’m being given a potential option for my future of “die of a heart attack” or “die of cancer”.  I know that sounds overly-dramatic, but it really is how I’m feeling and I went from feeling great physically and emotionally one day to nearly completely falling apart now.  Why must this all be so difficult?  I thought I was set to go w/chemo; rather standard regimen based on my pathology, but everything changed in a matter of minutes when seeing MO before chemo was to start.  It took a day for it to sink in and sink in it has!  I’m not liking the position I’m now in. 

OK – I do hope the quietness here means everyone is doing well today!!!!  My thoughts and prayers, as always, are with you all!

poodle_mum

To all you beautiful ladies - I hope things are going well.



I have great news - the hole the surgeon worked on last Wednesday is coming along well. I'm surprised and happy to see it cleaning up so well. I think he'll be very pleased when he sees me in two weeks :-)



I got a really nice email yesterday from the organiser of the Survivors tent for the CIBC Run for the Cure that will be next Sunday. I'm getting excited. I know the day is going to wear me out but it will be worth it and it's a step forward back into the world since I've been so worn out this month. Plus they are having a Tea in a few weeks so they invited all the Survivors who are taking part in the walk to come with a guest. I'm going to take my Mum because I'm proud she is walking with me.



I tried working on my stamp collection the other day but the repetitive movement was just too hard on me. I hadn't anticipated everything that happened and thought I could take my recovery period to relax and work on them ... oh well ... that's life :-)



So step by step, right ladies?



Let's hope for a good week for all of us.

Pam358

KBeee - I hope they figure out the the blood in your urine is something with an easy fix.

Jenn - sorry to hear you got the confirmation that you will indeed need to have chemo.

Poodle_mum - Wonderful news that you are healing well. It's about time things go in a positive direction! 

KBeee

Poodlemum- lad you're having a better day.



Pam- It's nice to see you back!



Lisa- When do you go to the MO again? I ope you get definitive answers this week. Don't think of TC as a dying of cancer option. A lot of University Medical centers on the west coast are pretty much exclusively using that instead of AC-T. It is very strong and very effective. (((HUGS))). I am sorry you are having to go through this.

poodle_mum

KBeee - how do you have all that strength to do so much walking? I use a power chair outside and still can't manage being out for very long. I don't have my full strength back. I'm used to going for two 1.5 hour walks a day with my standard poodle and so far we've only done one. I'm going to make more effort this week because Sunday is our bc run and it's going to be a long day. Probably 5-6 hours because I intend to stay for the whole thing.



It's been a sleepless night for me :-( Saturday night was perfect, fell asleep on the couch before midnight, no extra pills and had a great sleep. Tonight I was just in too much pain. Oh well, good days and bad, right?



I hope everyone has a good day. For those of you who are back to work, take it easy, but be proud to be returning to the world. For those of you who will have your chemo this week, my thoughts are with you.



Lisa - I hope you will find out soon what the docs have come up with as a solution to you.



Wrenn - how have things been going for you since you came home? Are they getting everything under control? I have one hole on my left that is big but getting better and a tiny one on the right - hope they've given you the good gauze bandages for everything and not Kendall or Curad.



Be well my friends - here's to hoping we all have a good week **raising my glass to each one of you wonderful ladies**.

LiLi1964

KBeee- my schecule this week is Cardiologist on Wed, MO first thing Thurs morn w/chemo to follow (?), then run to PS for expansion and f/u.  Fri run to fam doctor office for Neulasta injection.

I've sent message to MO asking to delay chemo for 1 week.  My husband has off every other Fri and that was last Fri and will be next Fri (so if I start chemo this week I'm on a schedule opposite of his Fridays off - and if i feel like crap or am too tired, I need him available to get me to family dr for injections which is a 40 min round trip).

That's the schedule as it stands now - all subject to change.  I'm aware I'm in the 8 week post op period so if MO wants to start chemo on Thurs, I'll start and we'll manage something w/the Friday injections.

Hope you are feeling better KBeee.  Are you sure it was blood in urine?  Is the chemo drug red and perhaps that's what is passing (which would be a good thing)?  Whatever it is I hope they figure it out.

wrenn

Hi poodle mum, Thanks for thinking of me. I am doing ok. I am still weak from the infection and low hemoglobin but hopeful that things are on the mend. It is creepy to have my dressing change because they have to poke the dressing into the hole with a probe and it feels really strange going in. The sinus goes 3cm deep and then 8cm across and veers off another 4cm so I am trying to not picture that as they are stuffing that tunnel with a long strip of packing. Ick. It doesn't hurt though.

I am surprised still that recovery from a BMX is still happening going into the 7th week postop but I guess it is not unusual.  I will find out this week if chemo is delayed again but I am not that worried since I don't really feel like I have the strength to deal with it anyway. 

I have started reading books to change my attitude or to trust the gods more to try to decrease my anxiety level and this forum is better than any book as far as helping me to keep a perspective. There is always someone worse off and it makes me feel lucky in comparison.

I am glad things are improving for you and I hope they continue to do so. Same for all of the wonderful women here. Thank you and blessings. 

KBeee

Just checking in to see how everyone is doing.  I have been doing well the past few days, but almost hesitate to say that wondering when the other shoe will drop!  TC is definitely a doable regimen, even though January 3 seems so very far away.  I am glad the calendar has turned to a new month.  It has been almost 2 months since I was diagnosed and so much has happened.  Though it seems like time stands still, it does go by, and I can only hope these months of chemo go by as fast. 

princessajf

Hi. I haven't posted here before. I'm Amy. I had bilateral mastectomy with te on August 28. Unfortunately I developed an infection on the right side (the side that didn't have cancer) and ended up back in the hospital for 4 days and had the right te removed on September 11. Good news... Cancer is out and only tamoxifen for me.



Here's my question. I run a super busy optometry practice. I'm on my feet 9-11 hours a day usually. My boss is amazing and really understanding. They really need me so I said I would try to go in tomorrow, 10/2, but right now I still have pain and can't seem to get myself out of bed before 10 am. I'm exhausted again by 4 in the afternoon. What do I do?

poodle_mum

Hi Amy,



We all heal differently and have different levels of what our bodies can tolerate. My best advice to you is don't push yourself. If you push yourself too hard or too quickly, you could set yourself back.



Maybe sit down with your boss and see if you can work out a schedule that helps you heal while still being out there working.



Perhaps some of the ladies here who have started back to work can help you out with that.

aviva5675

I agree- dont push it. I went back half days last week and thought, oh one week will be fine, and I was exhausted by Thursday. Feel better this week, again half days, and am wondering if I should get clearance for full days next week or just give it one more week.  Its hard emotionally and physically. Dont over do because you dont want to damage your healing.  If you have leeway- maybe get a flex schedule or work half days??

princessajf

Thanks so much everyone. My boss is amazing and basically told me I could work on my own schedule. Unfortunately I don't have one of those jobs I can do from home. I'm doing minimal administrative work from my house, but most of my job is face to face. I'll take it easy!

KBeee

I agree to seeing about part time hours.  Also, instead of being on your feet, is it possible to be on a stool or to get off your feet for a bit?  That migh thelp.

princessajf

I sell glasses so most of my job is reaching up and down, picking glassses off the boards and out of the cases for people. A stool isn't an option. When I'm there I'm moving. We're a high end boutique and my specialty is personalised frame selections and making people look good. I'm thinking I'll last a couple hours at best

LiLi1964

Well, Ladies, I got a response from MO on a few things:  the reason no biopsy was done on right nodes is the Radiologist did not feel she could get anything reliably via simple needle biopsy.  MO and BS discussed further later on Thurs after I had left and it was told to me today that they want me in surgery to get node(s) removed – unclear how many but sounds like one or a few – waiting for BS office to call me to arrange.    They feel better getting tissue out that can be properly and fully biopsied so we know what we’re dealing with. Since I’ll be there and be put under, I’ll likely just have them put in a darn port right away and be done with it (if chemo doesn’t agree w/my veins, I don’t want to go in for ANOTHER surgery!).  MO is fine w/delaying chemo another week until we can get all the info possible from surgery and Cardiology.  She assured me it would not put me in any danger of relapse – not to worry about going beyond the 8 week period.  Better to have all the info before chemo starts. 

My mastectomy specimens were examined for hormone testing and it is verified that I am Triple Negative – all mastectomy tissues came back exactly the same as the miniscule biopsy tissues.  So we are certain what we’re dealing with there. 

My blood work I had done prior to when chemo was to start 9/26 is showing I am “mildly” anemic (no surprise there).  She will watch that closely as we get chemotherapy started.  All other functions looked well (finally some good news!). 

So, looks like I’m back in for surgery – I don’t know when.  But I am on the schedule to begin chemo 10/10 barring any delays w/surgery scheduling. 

Chatted w/my family doc and she is not of the same mind as me regarding not using Adriamycin.  She said I need to make sure I listen carefully to what Cardiology can do to protect my heart and then I need to think long and hard about following the recommendations of MO – she seems much more concerned w/my cancer than my heart (makes me wonder if there is something I don’t know here????).  So, that’s right, I’m on the fence again as to what therapy….AC/T or TC.  I’ll see what Cardiologist says tomorrow.  Then listen to what MO says after she gets recommendation from Cardiology.  This is all so much to take in; I find myself having a little pity party too often and keep having an annoying and unrealistic thought go thru my head again and again – “I want my old life back” – even though I know that is impossible. 

So, I’m conflicted once again.  Thought my decision was sound but now I’m worried how my family doctor was really concerned I’m making a poor decision.  I’ll keep an open mind and listen to what is put in front of me this next week and decide as best I can from that. 

I’m really nervous if all docs tell me Adriamycin is the drug to use…after everything I read it scares me.  Yet I know I have an aggressive cancer and it is widely used for TNBC so perhaps I should stop putting my 2cents worth in and let the specialists do what they do best – easier said than done, though (and you all know my trust issues w/docs so I don’t think I need to explain further). 

Well, one day at a time.  Let’s get this surgery done and over with and move on from there.

Oh, and just to top everything off my husband was furloughed today because of Govn Shut-down….indefinitely.  Great, like our finances haven’t taken a hard enough hit so far - now this! 

Wrenn – notice we have something else in common again?  Our start dates are now the same.  I seem to have gotten to know you thru our posts and almost feel like we could be sisters in our thoughts and experiences….wish we could go to chemo together and hold each others hands (that really makes me sound like a baby, I know, but it’s how I feel).

I am so happy you are continuing to mend.  You deserve to feel well again; I swear you’ve been thru more than your fair share of issues from surgery!  What does your MO say about further delaying chemo given your TN status?  

Oh, and I hear you on this forum being better than books about anxiety!  Remember, Search and Destroy, Wrenn – that’s the motto! 

Princessajf – I also returned to work ½ days for 2 weeks before returning to full time.  It was just as Aviva said – exhausting those first 2 weeks back (amazing what the surgery takes out of you!).  Don’t over-do it.  Listen to your body and when it tells you its tired, then it’s time to go home and rest.  Take advantage of your employers offer to let you set your schedule; I think you’ll be happy in the long run to ease back into work slowly. 

KBeee – did they figure out what’s going on w/your urine?  Is it a SE or is something else going on w/the bladder?  I didn’t see that you had an answer from that yet…… (maybe I missed it).  And the abdominal pain and raw throat? 

It’s not necessarily that I think of TC as “dying from cancer” – that’s what I’m getting from my docs – which worries me.  It may have to be what we use if they can’t protect my heart (and I have no heart disease but I don’t want it either – not w/my family history) but it certainly is not their first choice – again, which worries me.  I’ll have flippin grey hair (when it comes back) just from all the damn worrying I’ve been thru!!!!!  Forget chemo doing it – the stress of all this will be the cause, I’m sure! 

Poodle-mum – Great job on the fund raising!  You go, girl!!!! 

Yes – we have good nights and bad.  Hope you are resting better now! 

Jenn – so sorry you have to endure chemo again.  That’s not the news we wanted to hear.  But I swear, you have an incredibly positive attitude!  And I’m glad you are healing well, too!  That’s just terrible news that you have to shop for new clothes – not!  So see there, something positive – have a blast shopping! 

Honeybair – how are you sleeping?  I do hope better; I too had such a long, hard road w/sleeping and the mastectomy just makes it so difficult.  I wish so bad for you to be able to get back to bed and get a restful nights sleep.  I keep thinking about you and wishing you the best! 

I’ve chewed up enough space here.  Hope everyone has a wonderful evening and all are enjoying this nice mild autumn weather that seems to have settled upon us.