June 2012 Mastectomy

Lynn27

annievan  I'm a new "veteran" as I'm still technically in the midst of it all (first post-op visit is in a couple of hours).  I think it also matters what kind of reconstruction you have.  I had TRAM.  The first few days home are really blurring as I mostly slept and dozed in between small pockets of lucid conversation.  It is helpful to have someone there to plump pillows, fetch water (and pills), serve food, help you get up (tissue reconstruction folks can't use their arms and need back pushes) for 3-4 days.  I slept on a recliner but needed DH to raise and lower the foot rest (not allowed to use the lever) in the middle of the night for bathroom runs.  I found it easier to get in/out of the recliner than the bed at first.  By day/night 3 i was sleeping in my bed.  By day 3-4 at home you don't NEED as much help, but it is nice to have someone help towards the end of the day with fetching because you will get tired.  Have your kitchen basics (dishes, glasses, pots, fridge) rearranged so you can reach things easily.  Have extra toilet paper easily reachable in the bathroom.  Have someone tidy up the kitchen.  Wash your clothes - especially the camisoles that you will probably spot through the bandages.  Take a bunch of DVDs from your library.  Unless you are great friends, keep companion visits short.  You'll be tired and you won't be in the mood to look for conversation topics once you've exhausted "how's the recovery".  Only great friends can continue topics from your ongoing relationship and will understand your less than full participation.  Fortunately, a little visit will go a long way. 

faithhopenluv

Yay for those w clear nodes! So happy for you . Kirwin I agree the recovery from the axilary node disection was the most difficult so far. I'm glad they were separated for me.



LauraB - he really asked you that??



Annievan - I think a lot of it depends on your definition of out of commission. I can shower and dress myself, I can get up and down, bend over to pick up light things. But I will say I'm not eating as well as I would have if my mom wasn't here. I would chose a sandwich over a salad, junk over fruit that needs to be cut, peeled and washed. I am certain I could have managed by myself since day 3-4 but the extra help is nice.

tellie_savalis

Hi guys,

Doing well today.  Surgery was Tues (umx no recon and ALND) just one Tylenol today!  I was afraid to quit the pain killers but feel so much better without them.  Small amount of discomfort, mostly in armpit, side area.  Drains are annoying.  Haven't looked yet.  No bandages, just disolving stitches with some sort of clear skin glue over it. Working up towards a shower.  DH says it looks pretty good though.  Hope all is going well for everyone. 

Corky

planetbananas

So happy for everyone who has clear nodes!! I find out tomorrow if my axillary nodes are clear (I know my sentinal are not).

Annievan - I had double mastectomy with tissue expanders and 2 drains. I do not have any saline in the expanders, my P/S likes to go slow and my first fill will be in 3 weeks. I spent one night in the hospital - I probably could have spent another but when they asked if I wanted to go home, I said yes. Tomorrow will be a week from the surgery and found that I regained range of motion each day. The side without the lymph node removal feels so good that I can probably start to walk my dogs soon, the lymph node side is still quite sore. 

I can feed myself if it is simple and microwavable, I can make tea/coffee and walk around the block. I would say I was able to start doing those things 3 days after surgery.  

I have had some visitors, but I think I am going to wait until the drains are out (hopefully Monday) before having any more people over. I did hire a dog walker, though. 

I think sex and intimacy is a very personal thing, and each woman's wishes should be honored. That said, ****and I am only posting this for the benefit of others as I so appreciated people posting things that maybe were a little TMI, I hope I do not offend anyone****  for me, intimacy and feeling close to my husband are important enough to overcome my insecurity/squeamishness, and we have found a way to 'connect' drains, bandages and all. It did feel weird, but also very healing and life affirming.  

sandpiper1

Planet...the last part of your post was most def not TMI.....It moved me....

25weeks

Hi everyone-

It's still hard to post since I'm doing it from my phone still. Yesterday was the worst day for me yet. Couldn't hold any food down, no energy, and a slight fever. My PS was close to readmitting to the hospital if I didn't turn things around last night. I managed to suck down 3 protein shakes & get some sleep & feel much better today, though still very weak. I'm also feeling a bit sad. Anyone else gone through a little self-pity? I think mine stems from my husband. He's taking care of me the best he knows how I think, but regardless of the situation, he needs attention & recognition which saddens me greatly. It makes me feel wonderful to help people in time of need, yet this is certainly not his strong suit.



I feel like he just expects me to do whatever I can by myself. He's clueless to my emotions & need tor constant love & encouragement. He just left me here alone to go eat and get some work done. I asked why he couldn't work/ eat at home and per his usual MO, he got defensive. Was it wrong of me to want & ask him to stay? Should I now apologize to feed the emotional immaturity that he needs? If not, I suspect he will be cold and bitter toward me. I can't handle this right now. This behavior is par for the course for him though. I'm not surprised, but extremely hurt.



What would you do?

faithhopenluv

Planetbananas - definitely not tmi, it is really sweet. You are so right, each of us is going to take a different path. What is important is that our feelings are respected, especially because as 25weeks this can be a pretty fragile time. 25weeks - your husband may want to be comforting but not sure how or what to say.



Yay to all those w clean nodes! But I wanted to say something to those who haven't gotten results or those that havent heard the words they wanted to hear. I was In a dec surgery group when I had my lumpectomy and got the results that it was in 2 nodes. It was hard for me to digest and I was pretty scared until I talked to my oncologist 4weeks later. I wish my nodes were clear, but there's nothing I can or could have done. It really didn't impact my treatment (chemo either way), and as far as I'm concerned the node did its job. It took the hit to block a very fast growing cancer. If anyone of you hear the words you are dreading, please don't panic. It is out of you - that's what counts.

planetbananas

Thanks for the kind words, glad it wasn't TMI....

faithhopenluv, I was told the same thing about my nodes, that it did not impact the plan of treatment, even if comes back as axillary involvement. I just hope it got stuck in there!!

25weeks, I am sending you a {{HUG}} I am sorry that he is not comforting you, it really is such a fragile time. You said it is par for the course, I think it is natural to hope that something as lifechanging as this would bring out the best in people. I send comforting and strengthening thoughts your way.

Lynn27

Planet  I join the not TMI crowd.  Your message was sweet and affirming.  Congratulations on having a DH who clearly is a "keeper".

25 wks  I defy anyone on this forum to say they have never felt self pity once receiving that first "we'd like to redo your mammogram" message.  Some folks are just not good at nurturing (my mom is one of them).  Of course it wasn't wrong of you to ask him to stay.  Would it be possible for you to be more specific up front with what you need at this temporary and exceptional part of your life?  Something like:  I need you to stay with me from x to y to help me do z.  And then when he does it, give him the recognition and attention he wants in support of what he just did.  Then, he won't need to get defensive to justify his choices. 

FaithHope  As usual, you have good advice. 

I apologize to everyone who didn't have clean nodes who felt that horrible punch of "but what about me!" when I was crowing about my good fortune.  I did not mean to hurt you and obviously do not think things through sufficiently. 

curveball

hello to all Wire-Walkin' Junebugs. I got way sidetracked this morning and am just now getting on bco. Fortunately it doesn't look like anyone was scheduled for surgery today. Continued prayers for the recovery of NanG, 25weeks and no more nausea for Lisa143. Thanksgiving for my3sunz42 & beata44's clear nodes!

faithhopenluv

Oh Lynn - I'm sorry if I made you 2nd guess sharing your happy news. I happily posted my clear pathology on the bmx. We are a great group that will celebrate good news like its our own. My lumpectomy is 6 months ago today, so I was reflecting on how scared I was between the news and talking to my oncologist. Hugs everyone!

kirwin524

Ditto Lynn I got bad news but that has no bearing on me cheering and whooping it up every time I see clear nodes come up amongst our group! Celebrate every single thing that makes you happy and know we are smiling with you



25 I wish you weren't having to focus on what your hubby needs when you were hoping he'd be focused on what you need. It's okay to be sad and frustrated. I've seen a lot of posts that talk about the roller coaster of emotions and it is an apt analogy. Hang in there!



I have my first appt tomorrow with chemo onco so am hoping to learn more. To all of you who are healing I'm sending hugs, to those who are waiting or worrying I'm sending positive vibes and prayers.

JenH13

25weeks- you focus on you and he will come around from his grumpiness.  But you have to put you first in all this recovery.  I will hope and pray it gets better for you both.

I am doing ok given that I just had surgery on Monday.  Question for everyone- Did anyone have the OnQ pain ball?  How long does this last?  I know my surgeon said when it was done I could pull it out myself.. but how do I know when it is done?  The other thing is I have developed a cough since I have had surgery.  It feels like I have stuff in my chest and try to cough to clear it.  Anyone else have anything like this? Anything to worry about?

Other than that I am doing ok.  I rested in the recliner a lot today but tomorrow hope to get up and around a little bit more.

Hope all that are recovering are doing well, hope those who are waiting get good results, and may peace be with those waiting for surgery.  Like others have said, the waiting and anticipation is much worse than the surgery itself.

/hugs

25weeks

Jenh13-

Be careful with the chest thing. My PS said the chest is the first place infection can set in via pneumonia. My doc gave me an inspirometer to practice my breathing and keep my lungs strong. Ask if you don't have one. I literally had a panic attack waking up from surgery because I couldn't breathe.



The second source of infection is bladder (UTI), so make sure you're hydrated and urinating enough. The third source is wound infection.



I know the deep breathing is hard, but get the inspirometer and practice those deep breaths to stave off any pneumonia.



I felt better today, but a bit too drugged up. Gonna try to cut some back tomorrow do I can bee more functional.



Best to all of you.

Love,

Tricia

LAstar

I've had the chest-rattling cough too -- wow, does that hurt!  I'm working on my inspirometer, and I do loads better if I keep up on my pain meds since my chest is so tight.  My nurse said that the OnQ pain ball will last up to a week and it will shrivel up when it is empty.  Unlike the catheter, I might miss that pain ball.  Hope you are staying comfy.

curveball

I had never heard of the OnQ pain ball so I googled it. What a clever invention! This is the manufacturer's website, if anyone else is curious.

B123

curveball, thanks for responding! No, I didnt realize I could get that.. I dont even know what to look for.  I feel what I mentioned above and a small little dimple divot in my armpit.  This is crazy.. one thing after the other...

beata44

I apologize too, if I offended anyone with talk of clear nodes. It's a roller coaster ride, isn't it? My prayers are with everyone on this journey.



Beata

Karenr1028c

Annievan,

I had a BMX w/TEs on May 23rd - I'm now 4 1/2 weeks out. Overall, I wasn't as immobile as I thought I would be but there are little things that are hard to do for the first two weeks, like opening the fridge. And if you want to heat up food, make sure the microwave is somewhere you can reach it (without putting your arms above your shoulders.) I tried going off my pain meds after a week but then went back on them - no need to rush. As long as studf you need is out where you can reach it, you'll be ok on your own after a week. I rented a hospital bed (which was awesome and I didn't need any help getting in and out of bed) and lived in the family room for over 3 weeks. My husband slept next to me in a recliner and for the first few nights set his alarm to give me my meds every 4 hours.



The drains are a big pain. Two of mine came out after a week, the other two at three weeks. Make sure you have big tops to wear over the drains. When I finalky got them all out, I got a little more active then they were leaking. So your body will tell you when too much is too much.



I had my husband and parents here almost all the time, You might want some down time from visitors. Plus, you'll likely be taking afternoon naps for a few weeks.



Oh yeah, make sure your pain meds are accessible - you can't open childproof bottles for awhile.



Each week gets better. This week I feel like I could do almost anything! But I have to remember I'm still healing. Good luck - it's so much better on the other side!

my3sunz42

I had the OnQ pain ball, but truth be told, I'm not certain it did much ... my pain still hit an 8 on the scale. They did remove it prior to my hospital release.

Question for those of you recovering ... I've been experiencing a bit of the 'blues' this past week. You know, sick of being sick, tired of having people hoover over me, just wanting to do things on my own and wanting to get my life back to whatever 'normal' will be. Without knowing all this is going through my head, many of my friends are asking to visit ... honestly ... I'm fricking sick of talking about feeling like shit and what my experience has been and I don't want to put up a 'brave/happy' face for their visit. How do you politely decline or post=pone the visit? I know they all mean well & the visit is probably more for their peace of mind, than mine and I feel so selfish ... but I'm just not up to it. Crap, if I had it my way, I'd have the house to myself for the entire day and be a happy camper. 

LAstar

I've cancelled scheduled visits with friends at the last minute & just said that I'm having a hard day and not feeling social. Everyone seems to understand. If you feel incredibly relieved after you cancel, you know you have done the right thing for yourself! Don't feel guilty about it!

Karenr1028c

My3sunz,

I felt the same way, especially when I had all my drains hanging off of me and I was wearing baggy clothes. One thing that helped me mentally was getting my hair washed and blowdried at the salon. I've been doing that weekly and it's so uplifting!

Another thing I did was start a CaringBridge site. It's a free site where you can post journal updates and friends can leave messages. It has helped so much because everyone gets the updates and I dn't have to repeat myself a million times. I started it about 6 weeks before my surgery (www.caringbridge.org/visit/karenfreedman). I was seeing an awesome therapist and she actually suggested it.



I told a lot of people that I didn't want to visit until my drains were out and my husband played interference with the phone.

planetbananas

My3sunz so far I have used the drains as an excuse and said, once I have my drains out I will be ready for visitors. I am not sure if that will be true, but I did feel a need to delay the visits a bit

Karen1028c - agreed, having my hair washed was extremely uplifting. I made the decision to cut all of my hair off before the surgery, even though my chemo won't start until after 6/27. I know we are all different, but for anyone who is considering this I highly recommend it. I am so glad that I have 2" of hair at the moment, it is making things easier all the way around. In fact, I am getting it even shorter next Saturday.

Here is a tip for the child-proof cap that I discovered when I was home alone: Press bottle under chin and with both hands twist in a clockwise direction. Silly, but it works and it saved me! OOPS -EDITED TO CORRECT: TWIST IN CLOCKWISE DIRECTION

curveball

Prayers for taismommy that she will be freed from fear, desireable results from pre-surgery testing, and that surgery + reconstruction will go well. For Llgrtt that she will have successful surgery and minimal side effects from RT. Continued healing for 25weeks and NanG.

25weeks

Nodes question.



I'm home alone, barely awake & decided to call my BS for pathology report. ( surgery was Monday). She took 3 nodes & this was the brief response I got (she was at hospital when she called). One node clear, one node had micro-something's, and one had isolated tumor cells.



I called my onc for details, but she wasn't available & my appt with her is Tuesday. Any insight as to what this means? Obviously, my nodes are not clean, correct? I also know this is a decision for my onc regarding treatment, but to have to wait 4 days is ludicrous.



Any insight?

MMTOMH

25weeks...I bet it was micromets.  That means you are node positive, according to my research.  Also, the isolated tumor cells used to be considered node-negative, but a Danish study showed that women who had ITC and did not receive chemo had 56% increased risk of recurrence.  Looks like you may be getting the chemo talk...sorry

NanG

25weeks....you R in my prayers. I can relate to the husband being a little clueless on how to care four postoperative but I can say that having a team of people to depend on has taken the pressure off my husband. I think everyone flourishes in times like this when they can have the freedoms to help where they excel. Some men don't excel at that tender hearted bedside stuff...but I have some friendships that are blooming because they are interested in helping in ways my dh can't, such as cooking. Love him, but he's not a strong cook. But my friends who want to help have been there to talk to me when I need to cry too. I think some of the emotional comfort and empathy that we desire post mastectomy can maybe only come from women, because only a comrade in battle can really relate to the war...u know? My nurses after we're really helpful with that. I just right bawled to one girl the next day...mourning that my breasts are gone. I know they are not me.....but they were with me...and I had to let them go. She just held my hand and wiped away my tears and said, "I know..." that's all I needed. Tenderness...u know. So I can relate to expecting tenderness from your spouse and not getting it exactly how u want it, my husband and I felt that too...not that he doesnt care, or can't take it....but for us, he just can only relate so far. And that's okay. He is the best driver, seat belt buckler, hair and bum washer, water bottle holder, balancer, hand holder, movie getter, food/sleep nagger, and daddy to our girls that I could ever ask for. Plus he's working and being the provider still.

I'm praying for u 25



Lastar!!!! U did it girl! How u doing today?



I'm okay. I have pain still. On tylenol3. I too was not told not to rest! Isn't that strange. I feel like I was given no post op instructions at all and I'm kinda pissed about it. But, whatever, im gonna take it up with my onc when I see her.

I was so obsessively researching after I was diagnosed about what to do n not do anyways that I've known to rest and not push my post mastectomy exercises too early. That being said, I've got some bad bruising on my ribs, and even down to my hip on the left side. It hurts, and scares me sometimes...but I emailed a pic to the ps and he said he's not concerned! Pffft! Fine then! Makes me feel a little less special, but I guess that is not his job. Just make me cute boobies.



I cry a lot though. I think it's unravelling the trauma of amputation. I don't like the word mastectomy sometimes because it's disconnected from it being a removal of a body part...or two in my case. It's helping me accept where I am too, and being able to overcome that and move toward healing the body I am in, and with....and living strong for my future, if that makes sense.



I also really appreciated the sex tmi someone posted earlier. Definitely not tmi! I was wondering that too. Just the physical connection of sex, without a focus on the outcome...does heal. I think I need to look forward to that! I miss sex already!



I also miss sitting on the toilet to "go" and feeling comfy. Now I am so conscious about my position and my TE that I get hesitant! Lol. How's that for tmi?



Other things I miss....getting up in the morning and making the morning coffee...driving...sleeping in my bed on my side with my pillows...soaking in my bathtub...tweezing my eyebrows...picking up my 3 yo. I'll do them again soon!

planetbananas

I have the first good news since this nightmare started on May 14th (date of excisional biopsy). Picked up my surgery path report today: Only in one node, everything else clear, no remaining cancer in either breast.

I had no indication it would not be in more nodes, my surgeon and oncologist have been in a rush to surgery and treatment as soon as the tumor pathology report came back with such a 'crazy and nasty' (their words) cancer. To find out that we seem to have caught it early enough makes me so happy. I still need scans, but for now I am filled with hope!!

Hugs and prayers to all recovering from or preparing for surgery - 25 weeks, an extra hug to you!

curveball

planetbananas, that's great! Does this mean you will be able to have surgery for your scoliosis in the future, if necessary?

Lynn27

25 weeks  I agree, you have received a not clean node report.  It generally takes 2-3 days for a path department to prepare and assess the fixed slides from a node dissection.  (It is the frozen section that comes back so quickly.  But, it is not as thorough as a fixed slide and so no pathologist will do a final sign off on just a frozen section because disease can be missed.)  In addition, the path department has to comb through all of the removed breast tissue, in your case, two breasts' worth.  Again, they have to be thorough, you don't want them to miss anything.  Finally, your oncologist will want the markers from the tumors they find.  Yes, you have markers from any biopsies, but they also want to see if you have more than one kind of cancer.  Maddening, frightening, blood pressure-driving anxiety in the waiting?  Of course!  For me, I'd rather fret for a couple of extra days than get a wrong report due to rushing.  Too much is riding on the accuracy of those path reports.

planet bananas  great news that you got ahead of a "crazy and nasty" cancer!

I'm now drainless (!!)  I was so sure my PS wouldn't take out that last two drains at my first post-op, I was just over the 30 mL mark and he's pretty conservative, but believe me, I didn't fight him on the point.  He's pleased with the results, I'm so-so.  We'll see in a month when the swelling should all be down.  I have the ok to move my arms and begin stretching exercises but am limited to picking up only 10 pounds.  Holy cow, am I stiff.  Yes, not moving for 2 weeks will do that, but wow.  I can only imagine how horrible it must feel for those who had a number of nodes dissected or in the "old days" when they would take chest wall muscle.