A Post About A Man’s Comment
This blog did get a post awhile back from a man going through this surgery with his wife. I was on the road and couldn’t give it the time it deserved and want to talk a bit about it now. Also, some of my medical posts are so far down the blog that some people don’t see them, and don’t know what this surgery means for women.
Alex, although you have probably started going through this already, your wife will be almost crippled by her surgery. After a mastectomy a woman can not use her arms, can not sit up by herself, can not eat, brush her hair, or even clothe or go to the restroom by herself.She will have drains and bulbs full of blood hanging out of her body that are constantly pulling on injured muscles and causing her tremendous pain. She will look into the mirror and see a butchered body where her beautiful body once was and not even recognize herself. She will have to face the fact that she will never again feel her body react to a man’s touch or to cold, and she will deal with people who think this operation is just like getting implants.
For me, it has been like losing one of my senses. One quarter of my body has no nerve endings, I can not feel it if I cut myself or if I am touched. These new body parts are not mine. I joke and laugh and let people feel them because of curiosity, to educate others, and to give myself something to smile about. But those touches are not intimate, this is not my body. I know I still have so much to go through mentally. I miss feeling like a woman and feeling soft and curvy and real. I am numb, and not just where I lost my nerve endings. It has been 3 and a half months since my surgery, and I have over 9 months of surgeries still to go. I don’t have to go through the cancer treatments that your wife will face, and I can’t imagine how frightened or sad she must feel.
If you love her with all of your heart, you must get over your fears of how she will look when this is all over. She has lost a part of herself. She has to face her scars every morning. She has to ask for help to brush her hair and teeth. She has to go through the pain of expanders and treatments and the fear of her body revolting against her. I’m am certain that you hate watching her go through this, and that you love her, but the fear that she will look abnormal after this is over is not kind at this moment. And God forbid she have complications like I did, it’s even more heartbreaking.
I know that I have more to go through, emotionally and mentally as well as physically. I have a tremendous support network including my family and especially my friends…old friends back in my life, women that have contacted me from this blog and my new NORRA and race friends. I believe this network is here for me because I’m not giving up or giving in to this frightening experience, but I also know that I can only stand strong because they are behind me and beside me. They call me powerful, or courageous, but it is those who love me that give me my strength. I hope that you find a way to give that to your wife.
I wish her all of the comfort and healing possible through this traumatic journey. I hope you can be the man she needs to get her through. My heart and prayers are with her.
For Alex and other husbands/lovers/significant others of breast cancer patients:
On a group board I follow, husbands of some of the women have found this book to be helpful:
“Breast Cancer Husband” by Marc Silver
Also, let me share a quote on this body change issue from a fellow traveler that I greatly admire:
“You are more a woman today than you have ever been. Woman has spent history giving things up to go on – it’s what we do. You have made a sacrifice of your body so that you and those you love will continue to have the blessing of your presence in their lives. You are the ultimate in womanhood. You are beautiful in every way.”
-Treefen
Michelle, continued good wishes for your journey and your work on Courage. We’re all in this together.
May 7, 2010 at 12:30 pm
Marcia, thank you so much for your post. I really love the quote, and it is wonderful to hear from you again. I hope that life on your side of the range is wonderful, and you’re always in my thoughts and prayers. Thank you for commenting on this post, I was worried it was too direct. Thank you!
May 7, 2010 at 3:06 pm
That man Alex responding,
Its been 2 weeks and a day since surgery, my wife can raise her arm all the way up over her head and the implant looks very different than Michele’s, I’d post a pic but there is no place to.
Some good news,
the tumor was down-graded to nuclear grade 1, from NG2
it’s HERS negative
Estrogen positive
Margins were negative
Nodes were clean
and some growth protein was rated at 10%, or very slow.
ONCO testing is now in the works but my wife may only need 4 chemo treatments instead of the 8 originally thought were.
so things are better than expected.
this takes a lot of stress off of things
this al happened so fast it was overwhelming, two months ago everything was fine, within 5 days the told me my wife had cancer and would have to have one if not both breasts removed,
(all during a very difficult semester at school for me)
I love/ed my wife’s breast/s and this was a hard pill to swallow, and for all of you out there I love my wife more than her boob/s. (kind of a no brainer)
I was by her side all the time,drained the grenades(drains), and have done everything necessary to help her, and doing everything to make her feel beautiful. She deserves nothing less.
I really appreciate the pointers and comment, thanks everyone for your support, I really felt alone for a while.
I’ll get back to everyone for updates too.
May 19, 2010 at 8:27 pm
P.S
Michele,
My wife has one expander on the right side, she is complaining more about the pokes and rubbing inside under her pectoral muscle, did you experience this?
May 19, 2010 at 8:34 pm
Hi Alex. Thank you for continuing to post here. If you would like to email a photo to me I will gladly post it so that everyone can see how she is doing.
Yes, the rubbing against the muscle was awful. Have her drains been removed yet? The removal of the drains did a lot to relieve the worst of the pain, but the movement of the expander under the muscle was just awful. I think the drains pulled on the expanders, so they were causing a lot of movement.
I haven’t had it explained to me medically, but from what I understand, the expanders are put in mostly empty so they will have a lot folds and empty space under the muscle. As the muscle moves over the expanders you feel it because the expanders aren’t smooth like what should be under the muscle.
The good news is that she will notice a difference as soon as she has her first expansion. As the expanders get expanded, they smooth out under the muscle. After the second expansion I had very little pain. The act of the expansion doesn’t hurt (I have a video about that), but she will be sore afterwards. Tight and painful.
Please tell her she is in our prayers, and we would love to hear from her as well. My email is michele@courageismystrength.com and if you send her photo I will get it posted for you.
Thank you again, and take care,
Michele
May 19, 2010 at 8:44 pm
Yes, she had the drains removed a week after surgery, she has her first expansion next Wednesday.
She is taking Aleve for pain, and vicodin at night as it makes her sleepy
and loopy. She tends to be reserved and probably won’t post herself, this has gotten me in trouble as
her doctors ask why she doesn’t call and ask questions, like I’m some kind off control freak.
Tonight I woke found her asleep in the other room as she was in a lot of pain, I’ve told her to wake me up so that she doesn’t suffer alone. I guess there will be many nights like this, kills he however.
May 21, 2010 at 2:15 am
Alex, hang in there with her. Like i said in another note. she is riding a roller coaster of emotions that are tough to handle even for the strong of heart. You two will be so much stronger when this is all said and done. Your just being there for her will allow her to ask the questions when she is ready. We all take different paces thru-out this journey. Some like to be in control, where others want someone to take the lead and that is ok with them It sounds like your wife wants you in the lead position for now, but that can change as she gets more comfortable. I will pray for strength for her,
Also don’t forget to take care of yourself and family so that you will be there when she needs you.
My husband was awsome, he was there helping with advice and not pushing but encouraging when it was needed. Hang in there. Hope she is healing well now that the drains are our and the expansions have begun. I get my explander sway June 8th and am so excited but nervous as well.
Here’s a hug out to all the women, their husbands, significant others that the road to the end is smooth from here on our. God Bless and keep all of you safe from harm
Love Jane
May 22, 2010 at 11:41 pm
Question for Jane,
Did you undergo the surgery because you had cancer diagnosed?
If so did you have Chemo and/or Temoxifen?
If so Again, did this have an effect on your sex drive? not your energy level, or other physiological effects, but hormonal libido.
Just trying to get a perspective for what my wife may be felling in the months to come.
Others feel free to chime in please.
June 1, 2010 at 7:26 am
Although the question was not directed at me, I feelt the need to comment on this as well as to the comment you just left on my post about the stressed out mind. I have to ask you, Alex, how you can think that a woman can go through all of this without it taking a toll on her sex drive?? How can it not take a toll on how she feels about herself? And to exclude specifically the effects on her energy level and physiological changes is just silly, because for a woman they are all entwined.
I have never been one to be quiet about my feelings, and have maybe vocalize my opinions too loudly, but I have to say, in my opinion, that your posts often reflect your concern about how this will change YOUR life, and how hard all of this is for YOU. Granted, I’m sure that it is difficult, and I’m sure that my husband and friends had to put up with a lot from me during this, but your wife is dealing with breast cancer! She just had her breast removed! I’m sorry if I can’t be sympathetic to you, but I wonder if you spend so much time worried about how she is going to look, and when you’re going to have sex again, and why people are touching her remaining breast (they are trying to save her life, not feel her up! you should be thankful they are being thorough instead of offended they are touching your wife!!!), I can’t imagine you’re being supportive of your wife when you are with her.
I have to agree with what your friends and doctors are saying, you seem to be completely selfish in this matter. I’m sure other readers will be kinder than I will be, but your posts seems to be more about making you feel better than trying to help your wife.
This blog was created to help ease the fears of women getting ready to go through mastectomies as well as those that have already had them. It’s not women specific, many of our readers are men. It’s also to help encourage these women not to give up their spririt and to know about the bumps in the road they will encounter. I guess there will be other women that have unsupportive men, so maybe these posts from you will help them too in some way, but I can’t see that you will find a lot of support here.
June 1, 2010 at 8:11 am
It was just a question, both my wife and I are curious, your site has personally helped me understand many aspects of this disease from a woman’s point of view, and answered many questions my wife has had. I love my wife and would like to simply know what to expect in the coming months. I guess I have always been two steps ahead in this process, sorry, just me. Some of the information on this site is not available anywhere else. I have no problem with the journey that lies ahead, although, it seems clouded and unclear, I guess thats part of the journey, and I’ll take it. Sorry if I seem a little gloomy, for me, cancer has this effect. I really don’t see how exploring my feelings seems selfish. If I am to grow I need to ask questions and get responses, thanks for your candid response it was helpful. I’m not a bad person, just scared and confused. I see I have stepped in it, thanks for your time and site, I’ll continue on foot from here on out.
June 1, 2010 at 9:40 am
I heard a great quote once, if you live your life with one foot in the past and one foot in the future, you end up p***ing on today. Although I think it’s kind of crude, I think the idea is correct.
I don’t think exploring your feelings is selfish, and I’m sorry if I gave that impression. Although you have said that others share the opinion, maybe it is in the way your express yourself that makes it seem so. That’s okay, we are all human.
My biggest suggestion would be to slow down worrying about the time frame for things to be normal again. Be happy for what your wife has to offer each day, and celebrate her advances as they come. Live each day as she can, not looking forward to what may happen tomorrow. You are both on this journey for a reason. Don’t miss the point, live the life.
June 1, 2010 at 9:46 am
Good advice, thanks for being so strong and out spoken, maybe I needed a good kick in the ass, perspective is a good thing.
June 1, 2010 at 9:57 am
Hello Alex and others,
I was diagnosed with stage 2a breast cancer in december 2006. I had surgery one week later for bilateral mastectomies and did not have immediate reconstruction. I opted to do delayed reconstruction once i looked over my options. I then had 6 months of chemo every week for 3 weeks, one week off. Then i had a month off and started to learn how it is to do radiation on a daily basis for 6 weeks. I would go in do radiation and to work i would go. The last couple of weeks were the toughest as i started to have skin breakdown on the radiated area.
Then onto physical therapy for range of motion. Had that after the mastectomies also,
During all of this i felt and looked much less like a woman than i thought would happen to me in my life time. Along with this goes the feeling of what if my other half doesn’t see me as a woman anymore. You just don’t feel femine any more. This is when we need to band together and make it thru this trying time . Yes it changes our sexual drives. We are emotionally tired, we want others to give of themselves to help us and vice versa to help each other. That is what this site is about right Michelle???
I am going to Seattle to have my expanders removed and implants placed. Have bee n told they are much more realistic compared to the expa nders are. No more barbie ones anymore.I have a hotel that is across the street to stay for the first night, so if ihave any issues the hospital is right there. I am wishing everyone a smooth transition as you go thru the multiple journeys there are to get to the end of the road, Will pray for you all. God Bless and pray for me on th 8th and 9th that i make it those two days.
Hang in there Michelle it will be so worth it for us. We will have to get together when all is said and done and party as never before ok????? Love and Hugs to all that need them,Glad to see you are getting some feeling back. Yeah for you,Will keep in our family phone line this next week.
Take care JANE FROMwash
June 6, 2010 at 12:35 am
Just wanted to update everyone on the swapping of expanders to implants. I went in the office after getting myself in a panic. Have never used propofol for anything like this. Also i don’t like to be the patient but like to be the Nurse. The staff was very supportive from when i walked in the door and when they pushed me out in a wheelchair. The nurse took me back to the OR. i was up on the bed and the iv was started. Then the last thing i remember is them hooking up the iv fluids and it was lights out for me.
I woke up and they had me almost dressed. Got a sip of Apple Juice, helped into a wheel chair and to the door i went. We had gotten a hotel room right across the street from the office. I did not want to hit rush hour traffic in seattle on the way home. Much better this way.
After going thru this i am glad that i did it. The implants are so much softer, there are no more rocks sitting on my chest anymore. I do have some minor pain that is close to the armpit but is like a 3-4 on a 10 scale and he gave me pain medications to use which help get comfortable at night. Should be much better in a couple of days. YEAH!!! When you girls get ready if you have any questions feel free to ask. It was much easier than i thought it would be, God Bless to all my sisters on this journey with me. Jane
June 10, 2010 at 1:41 am
Wow1 I am so thankful to have found this web site. I am 5 months post Bilateral mastectomy. Early stage 2A invasive ductal carcinoma, and one in situ ductal carcinoma. The girls were no longer my friends, by by boobies! Large margins, axillary nodes clear yeah! No Chemo, 4% chance of recurrence in 10 years. I chose to keep the chemo and radiation as a back up. I have a 6 % chance of getting killed on a freeway. I am comfortable with my odds. I am taking tamoxifen. I was a 38 EE and not wanting to have them back that big EVER. Plastic surgeon wanted my rather large surgical sites to have a good blood supply before starting reconstruction.
I have been more afraid of the reconstruction than any thing. The idea of expanders was creepy, but the plastic surgeon made me hold them and make friends with them. Thank you for being so brave and informative in such a visual manor. I feel like I have a more realistic expectation of what is ahead of me.
I am having reconstruction with expanders in October, after my 30 year old son’s wedding in Oahu! Sounds as though it will be another rough 4 or 5 months. But how does having a cluster of tropical flowers tattood where the nipple should be? God bless you and keep you going – Pam 56
August 24, 2010 at 4:07 am
Oh Pam, I’m so happy that you wrote! You DO have new sisters, we’re all here for you! When do you have surgery in October? I have my implant swap in October.
Pillows, pillows, pillows! I took the pillows and made a u shape around my head and body to feel like I was laying on my side. The drains caused me the most pain too. The expanders start feeling better once they have fluid in them. And although I had my reconstruction right away, a great friend that visits and posts here often, Jane, had hers done later. She is a wonderful, kind, and caring woman, and I’m sure she will have wonderful words of support for you. She just had her implant swap and went through it with flying colors. She’s amazing.
I’m still undecided about what to tattoo for nipples. But right now I’m obsessed with girly things so I am leaning towards a true reconstruction, but I may change my mind. but I have joked about tons of different things, Super Girl symbols, Team Courage logos…..
Try not to be too afraid, and whenever you need to vent or ask questions we are all here! Please let us know how you are!
Love,
Michele
August 24, 2010 at 10:57 am