DIEP 2014

Butterfleyez, so glad you posted and shared what you are going through right now. I am sorry you too have been feeling the emotional roller coaster most of us seem to experience. I couldn't agree with you more, it is nice to have a place to come and share, vent, cry, celebrate. Your boss sounds like he could use some additional training in the HR department...and an apology to you although it doesn't sound like he's the type. I hope there are people in your work place that you can interact with you in positive and helpful ways. Also are you interested in, or engaged in a local support group. I can't say enough good things about the ladies I've met through some of the activities, classes and support groups I've attended through my local hospital and Gilda's club. They haven't all fit but I try to do something 2-3 times a month in that space. We also have an organization called Turning Point here in KC that not only has free classes offered for people with cancer (or post cancer) but for people with all types of chronic diseases. It is a very cool organization but only local. I imagine there have got to be more out there with similar offerings. New normal is tough. I don't think I've found mine yet either, not particular wild about the one I am in the midst of at the moment.  Friday after a week of laying low in a puddly wet mess on and off,  I kicked my backside out the front door and took a long walk and I think that helped. I also think holing up helped too. You mentioned stage 2 being hard emotionally. I said the very same words to two nurses this week that I talked to from the P.S. office. They both validated what I was saying and said they hear that from other patients as well. While we are all unique individuals there seem to be some very common ebb and flow to emotions through this surgery. Lifting you up in prayer, and sending love and light your way Butterfle. You are not alone.  

Here's a question I have been wondering about... As many of you have surmised, I am a very active person and DIEP did not really "take me out of the game" so to speak. Sure, I have been careful lifting things and I had reduced range of motion issues that have pretty much resolved with time and some PT. But, for the most part, people were shocked I was so "normal" looking a mere 7-10 days after surgery (at least what they could see, cause obviously the Frankenstein look was still in full swing). 

Immediately after DIEP I noticed my appetite was much less. I have always been athletic and in good shape for my age (whatever that age was in my life). Many lingering issues like stiff joints and arthitic hip  I pass off to having gone through chemo (fast tracks you for joint related issues) and rads (I am convinced my neurogenic cough, currently reasonably under control do to a trip to a voice specialist in NYC was/is a side effect of rads and several of my doctors concur). I Googled the appetite after DIEP and did find the answer....loss of fat cells create a lesser craving for food in your body. It was an interesting read.

Now, I find that I am sleeping in way later than I use to. Hubby gets up hours before me most days and this leaves me feeling like a slug. I go to bed tired and wake up tired! Once I haul my lazy *ss out of bed I am fine. Even my six o'clock alarm cat has given up on me! I have a TON of activity coming up soon in the next few weeks that I am in charge of as the Organizer. I know my adrenaline levels will kick in and get me by, and I have wonderful volunteers standing by to assist where necessary. I am Regional Director for the mid atlantic area and have a lot of support from well meaning, concerned and competant carriage drivers, so not a real problem...more a matter of curiosity for me since energy and motivation have always been present in abundance with my Type A personality.

All this blather for what is really a simple question: How many of you have noticed a greater need for more sleep at night? I know my body is still healing, and this would explain it. But how many of you are experiencing that, or have even taken note of it? I am about ten weeks post DIEP...and simply curious.

HeidiToo.....you are still using massive amounts of energy to heal. I was/am very active also. I had decreased appetite and had "deeper" sleep for months afterwards. I actually was borderline chronic insomnia pre-recon. For a number of months post, I thought another benefit of the surgery was that I was now "cured" of my sleep issues. Naw.....they're back....my body just needed more rest, for much longer than I expected. Appetite is well entrenched again too. Follow your body's lead.....give it the rest it wants without questioning why. In a few more months....I'm sure you'll see your old patterns reappear.

butterfleyez - when at PS's office last week for ultrasound, I said that I thought I'd expected too much from stage 2 and was told that many women express the same thing. We go in seeing it as "the end" and it is really just leg of the journey. I'm trying to be a less impatient patient!

LiLi, I think we had ours the same date. And yes, I did not bother discussing this with my docs because I figured I wouldn't hear anything helpful, other than the usual...you've had a massive surgery, blah, blah, blah....

hi from reading your posts Sounds like recovery will be harder/ longer than I hope

I'm scheduled 9/25  main concern is will I be able to lead my team " PURR for the CURE" on Nov 2? This will be our 5th year ( my 4th due to BMX ) Susan G Komen Race for the Cure

I walk now 4-6 miles 4-5 times a week 

Can I do this?

So inspiring to read all of your posts !

Deb T

thanks Georgie..

You're right. I had to go to HR and report him. He's truly a jerk. I have had trouble finding a local support group. There's one at my hospital but they meet in the middle of the day during the week. I'm certain the boss wouldn't understand leaving for that. It's truly a journey to recovery. 

Heidi 

I was the same way. I'm 10 mos out from Dirp and the fatigue has just started getting better. It's really hard for me to get up in the morning. I even had some visits with the fatigue clinic here trying to figure it out. I need to get up and be productive and it's truly been a schedule. My appetite has come back though...I need to get myself to the gym

butterfleye...10 months...good to know. I'm thinking of just allowing myself to sleep in until I feel like getting up. I am so hard-wired to feed horses in the morning, even though hubby has been doing it 95% of the time since DIEP. 

I think my husband expected me to flip out when I realized I had drains again. While I'm disappointed, it's still just a minor annoyance in the grand scheme. Of course, if they can't come out Tuesday I may be singing a different tune, but...

Heidi, I was 12 weeks out of DIEP and also got extremely tired very easily. I'm glad I had Stage 2 done now instead of getting all my energy back and then depleting it again. Maybe that's just me. 

Thank you, Elizabeth. I've adjusted to the change of game plan, and am looking forward to getting this surgery over with next Tuesday. I have too much to be grateful for to let the fact that I can't have the diep pull me down. And yay for us and our big girl panties!

Love and good thoughts to all!

Oh Ronna, you've been through so much! I understand how awful capsular contracture is. I've had it removed twice, and since my plans for the diep fell through, will be having the scar tissue removed again next week. My PS will also be swapping my round implants out for anatomical ones, and be doing fat grafting to my radiated side to hopefully soften it and help it heal. He's also going to fix a divot from the SNB.

Don't give up. There are still options available to you, and other doctors who perform flap procedures. What about a lat flap? Have you contacted PRMA? I've heard nothing but good about them. I wish you nothing but the best in this journey. Hugs.

Ronna, my excellent results were from UTSW with Dr. Teotia. 

My surgery is right around the corner, too, Sept. 29. Would also appreciate any advice. Also, I just finished chemo, and no doubt about it, CHEMO SUCKED. For those who have done both, which seemed worse, chemo or deip recovery?

Mary and Debiann - pack toothbrush and toothpaste, lip balm, phone and charger. I packed a robe to put over my shoulders because I wanted something pretty. You will be given skid-proof socks but take your own slip on slippers if you want. I took my brush and hair bands (I didn't have chemo) and my husband pulled back my hair when I couldn't stand it anymore. I had my kindle and thought I'd read but the pain meds kept me from being able to focus. You may have seen reference to Wilbur. He's the happy go lucky fellow that accompanies you on pain meds. We have all enjoyed time with him! I truly was thankful to have my lip balm. The first night when all I could have were ice chips, my lips were dry. The nurse put balm on every time she came in.

The first night you will have the warming blanket and may feel like you are having a supreme and prolonged hot flash! They will come in to Doppler the breasts although I've read that some have wires(?). I got so I could distinguish vein and artery sounds because I so wanted them to thrive. You may have a catheter and the bear huggers on your legs. Expect to have drains and possible abdominal compression. Some docs require it for patients and some do not. I woke up with a bra but it hurt so I didn't have to wear it. You will be quite swollen. I told my PS that my breasts were way bigger than we agreed (read porn star size). He smiled and said it was swelling. He was right, thankfully!

I wore some loose pants and a button front top to the hospital and wore the same things home since I'd had them on for only a couple of hours when I got to the hospital. I had slip on shoes. Take a pillow to put between you and the seatbelt when you go home.

When home I wore loose pants and soft yoga pants and front button blouses and sweaters. Actually, that was when I went out because I lived in pj's. Some have said guys' boxers are comfy or you can go commando. I wore soft cotton camis under the compression binder because it seemed to rub.

I wish I'd let friends do more when I had the cancerectomy (my word) in December but I didn't want to interfere with their holidays. In March I was in a better frame of mind and prepared meals ahead and allowed friends to help. 

Some say a shower seat is essential but we have a bench in our shower. Some like a recliner or use pillows, which is what I did. 

Get prescriptions filled ahead of time and purchase nonstick bandages as directed by your PS so you can change bandages at home. 

Stay ahead of pain. Drink lots of water and eat lots of protein. My PS allowed me to do table crawls and wall crawls after a couple of days so I could begin to gain ROM. I had T Rex arms in December but it wasn't so bad after DIEP.

Check in here often whenever you have questions. Someone will be able to respond to help you. Also, make sure you have phone numbers of your PS handy when you are home if you have concerns. If you haven't received info from them, I'm sure you will.

Oh, many of us experience sleeplessness prior to DIEP and a kind of "nesting" as we clean everything. I scrubbed the bathrooms and kitchen, cleaned all the baseboards, dusted everything, swept and mopped the entire house, made sure the laundry baskets were empty, and made about six meals to freeze. We become energizer bunnies knowing we won't be able to do those tasks for a while.

As for chemo vs DIEP, a friend said chemo was by far worse.