DIEP 2013

Nihahi and Marty, thinking about you today. Pray The Lord that everything will go smoothly! Please update as soon as you feel up to it. We will all be waiting here to hear from you!

Thank you to everyone who responded to my freak-out post.  I spent yesterday waiting for an ice storm that didn't happen.  Because I was stuck at home, I called my brother-in-law who is a Stage 4 bladder cancer survior for 7+ years and had a kidney removed long ago which took 6 or 7 hours.  He's had tons of surgery since then too.  He talked me through a lot and he's very practical.  His first advice when I started chemo was "plan a trip so you have something to look forward to".  So yesterday, he ran through everything from pre-op to coming home with me.  He knows I've had surgery before but it was like a review for a law school exam!  Let's start at the beginning and work our way through the whole thing.  He had me laughing by the time we ended and even gave me some advice that worked on getting an issue resolved on our backyard reno we are having done.  

I felt stronger after I spoke to him.  I know this is the right thing to do and as my husband wisely said "you just gotta let it all out before you can move on".  I felt so strong that .. .

I am going to my pre-op appt by myself next Tuesday.  My husband has gone to every appt and nearly every chemo or other procedure with me.  However, I told him I'm doing this on my own.  It is at a hospital I know well (although my surgery is at a sister hospital) and I know if I am on my own - I will suck it up and deal.  

One thing I did at the pre-op appt for my lumpectomy (God that seems like ages ago) - was be up front with the anathesioglist that I am prone to panic attacks and have anxiety that rears it's ugly head when I am under major stress.  He looked at me and asked if I had meds for the attacks and I said yes and he said "take them before you come because a happy calm you is better for us in surgery than a freaking out you".  I am going to see if they will let me do that as well.  If not, then I am going to ask how they are going to manage me with a panic attack prior to surgery should one occur?  I'm sure they've done it before.  

I also downloaded the Successful Surgery guided imagery to my iPod.  Nihahi mentioned it and I've used the Belleruth Naperstak (I actually spoke to her once because she lived near me in Cleveland) recordings before with a lot of success.  

Then I read a book and took a nap.  And my husband volunteered to go get the kids from school when it was time. 

In short, I took care of myself.

Today, I'm back to taking care of business so to speak.  Getting organized.  I've cancelled and rescheduled appts we had made.  Paid some bills, did some laundry, and am getting ready to go to the pharmacy where they run through all your medications to ensure you know why you take them!  It's a requirement to do this prior to the pre-op appt.  Silly, right?  I think it's more for people who are older if the truth be known.  

I got the U-shaped pillow delivered today.  Gotta love Amazon.  I think I will get some good use out of it.  

And I do think if I could have the HGTV guys with me at the hospital - things would go so much better!  Bryan would make sure I got all the drugs I needed; Mike would make sure that the staff knew he was watching them and Scott would just look good.  It would be perfect!

So I am coming along . . .

Thanks again

Robin

Nihahi and MartyJ...hope you're having sweet dreams and wake up to Victoria's Secret.  Thinking of you both all day.

SheChirple - that would probably be doable. You just may want to leave the window open for some flexibility depending on how things go and what else you have in your life. I am in my 5th week, and still tire pretty easily. (Yes, it is my naptime now!) With two tween/teens in my house and a hubby who works late most nights, I could not have gone back to my teaching job yet. I am scheduled to go back after next week's April vacation. Thankfully I am currently working only 4 hours a day - (I have been job-sharing this year in order to get back on my feet post-treatments, and knowing that I was having this surgery) - so I hope to have the energy to teach my classes, do kid-driving as needed after school, and still have enough left over to do my prep/grading work somewhere along the line. AND time to NAP!



Janet - I LOVE that story!!! Women DO rock! I hope some good Karma comes that lady's way.



Sending hugs to all - especially Nihahi and Marty as they wake up from their long naps, and to sbelizabeth for an amazing weekend as you get ready to jump on that table!



Jeannie

Goodie--two more bike rides planned, one Saturday and one Sunday.  My husby and I sometimes ride to church; everyone's used to seeing us in bike clothes there and God doesn't seem to care!  This weekend we're also getting massages at a wonderful spa (and I'm getting a pedicure!), and generally having a great time together. 

Can I get scarlet toenail polish before surgery if I leave my fingernails bare?

Gini, when I was in the Air Force, I had two nose surgeries that would have classified as a "nose job," but since the government doesn't pay for such frivolous plastic surgeries, my doctor justified it due to a deviated septum.  Which I had, but the shape bugged me a lot more than the deviation!  Voila.  Cute nose, no $$. 

Thanks for the well wishes and the hugs...can't wait for Monday morning...

Feeling almost all better!

Best wishes to all.



I guess recovery for phase 2 wasnt bad. Its just that I have been through so much a little bitty cold can bring me tomy knees. No more sx for me. Surgery that is.



I wore toenail polish to all my sx s.



Cleaned kitty litter box and refilled there waterdispenser. Poor things were thirsty. Feel like having a salty dog tonight. There is new study that says its okay to drink.



Cheers

Thinking of Nihahi and MartyJ hoping that all is well and looking forward to updates.

Sbelizabeth seems like your holding up just fine your on my mind we will all be with you Monday morning !



Gini curious if you have scheduled your stage 2 surgery yet and how your feeling with your recovery since stage 1are you pleased with Dr.Carty's work thus far etc ?



Went to Target with dh today and walked from the front of the store to the back and of course back to the front and I felt like it was a Marathon ! Slept for nearly 2 hours when I got home. I know this takes time but I'm getting a little frustrated with the exhaustion. On the bright side my dizziness seems to have subsided.

SheChirple-- I think 4-5 weeks sounds doable as well but you need to give yourself some flexibility in timeframe (not sure how that is with your job). There are weird unexpected times where you do tire more easily.



Hhcats-- rock on with that planning! . Glad to hear the feisty part back in your posting.



Faith-- you are less than 2 weeks out. Please allow yourself some time to feel better. It's like this weird turnaround all of a sudden where you go from fuzzy brain to "gosh I feel awesome", which I think will come soon for you...but give your body that time to heal.



Sbelizabeth -- have fun on the rides this weekend! We will all "be with you" on Monday.



Fredntan-- yay glad to hear you feel better. I'm loving the weather, but not looking forward to that brood of cicadas that are expected to show up soon in our area!



MartyJ and nihahi-- I join the others in looking forward to hearing from you when you are up for it.

Sbelizabeth- pamper yourself this weekend. We are all thinking of you. You will do great!

Thinking of you Nihahi and MartyJ. I hope you are both resting and recovering after successful surgeries!



I am great! It's been 10 weeks since my surgery. Today I walked the dog twice, did gardening, took my girls shopping at the mall and made breakfast, lunch and dinner for the family. Life has returned to normal and I'm doing pretty much everything I did before.

Good morning, MartyJ, welcome to the land of the awake!  I guess that's temporary, though.  Medicate, rest, move when able, medicate, rest.  Thanks for the update!

Kiwimum that's awesome ! Gives me hope for the energy returning.



MartyJ great to hear from you ! Seems like your doing well you had drains after stage 2 ? Is this common practice ?



Had a severe allergic reaction to the paper tape they use to hold gauze in place after drain removal. So darn itchy I could scream. In the mean time benadryl is helping.

Marty-glad all went well! Drains after stage 2? Hopefully they are "different" than stage 1 drains in that they don't stick around so long?... (Please please please!). Hope the dilaudid is doing its' thing and you are feeling no pain......let us know how you are faring-we are thinking about you!



Nihahi......thinking healing thoughts about you.....hope you are doing well......



Kiwimum-nice to hear from you! You're just a few weeks behind me, but with my abdominal "problem"', I feel like we are at about the same place. Glad you are getting your energy back!



SBElizabeth.........also thinking of you this weekend......



To the rest of you Warrior Sisters - "TOWANDA!"



Namaste and God bless - Jackie

AnnBR - I just responded to your message about the pillow.  In case anyone else missed it I bought the 

Moonlight Slumber Comfort-U Total Body Pillow Full Support Pillow CU9000 and it arrived yesterday!  Wow!  It is big but it seems like it will do me some good.  I test-drove it on our bed and in my recliner and I was happy how it felt.  It will keep me in one spot and comfy - I hope.  Oh and I got mine through Amazon.ca in Canada.  It might have a different name in the US.  

I hope Nihahi is doing well today.  I've been thinking about her.  

This morning, I rearranged my closet and put everything essential (like undies and bras and button-down shirts) on a rack and shelf that I can reach with little reaching or pulling.  I'm going to create my nest for when I come home, too.  Books, magazines, music, etc.  And my massive pillow, of course. 

Warning:  File this Under Too Much Information and move on if you like . . .I am chugging juice and Miralax right now.  Yup, I have a hemroid.  Second one ever.  Do I ever have the timing.  9 days before surgery.  I go for my pre-op appt on Tuesday AM and can't wait to tell them everything is fine except for this tiny little problem which I'm embarassed to mention . . . it's my new life. . .I think this whole experience has been a lesson in how nothing should phase me now.  Not public humiliation, not baldness, not phone calls from school telling me my eldest has gone a little bonkers.  I'm like Gandhi now - I smile and nod.  Oh and I'm bald, too.  Just like him.  Of course, my husband counts the little hairs now sprouting and the other hairs that never fell out and says I am not bald.  But he can bite me because I am bald!  For some reason, I don't think Gandhi would approve of that statement . . .but you never know.  

I am feeling OK about the surgery right now.  I've processed it a bit more and got my bald head around the fact that in terms of surgeries - this one doesn't really grab at any major organs (even my PS told me this) and it's not as bloody as most surgeries (another thing my PS said) - it could be a lot worse.  My dad had a triple by-pass and that was a wonder to behold in recovery.  I'll never forget it.  My sister-in-law had the Whipple Procedure where they rearranged her insides for her.  That sounds a lot worse to me.  I am looking at this as they are rearranging my "outsides" more than my "insides".  I can handle this - I've had a partial thyroidectomy at 25; a kidney stone surgically removed at 28; and two c-sections one of which I got roughed up pretty good.  This time I am asking for the happy drugs and sucking it up.  

No walk in the park but it could be worse.  At least as of next Tuesday, I am officially on the road to recovery and this nightmare will start to receed a bit.  My nightmare of being Triple Negative won't ever go away but with this surgery, I will know I did all I could to stop it from ever coming back.  There is nothing left for me but exercise and eating right after the surgery.  They caught it early as a total fluke - it shouldn't have been found really and here I am not 7 months later - after a lumpectomy, multiple scans which were clear, and 8 rounds of dose dense chemo - having surgery which will hopefully put an end to any local or bilateral recurrances or new cancers.  I just pray the chemo did it's job if there was anything to do a job on as I was considered node-negative (one isolated tumor cell) and some lymphatic invasion.  

Triple Negative is aggressive and this surgery represents the most aggressive thing I can do to stay alive and raise my kids with my husband.  So I have to do it.  For them and for me.  

I've rambled on too too much.  Tell me to shut up, please.  I am off to read this month's Vanity Fair with Audrey Hepburn on the cover.  Audrey would have looked amazing bald, don't you think???

Faith - I am working on scheduling my stage 2. Hoping for right when school gets out. So far very pleased with Dr. Carty. I trust his judgement and his honesty. When I was making other decisions about my treatment that affected my surgery timing, he was very honest about his opinions, even though he told me he really shouldn't have an opinion on those matters (if that made sense - he basically advised me like he might someone in his own family, I think). I was "admiring" his work in the mirror after my shower today. By no means do I look like a Victoria Secret model at this point. But the incisions are all healing well. My abdomen still has some swelling - (or leftover fat that was higher up and has worked it's way down.....?) We will discuss more Stage 2 details in 6 weeks.



He was also very honest when I showed him my new bald spot this past Thursday - yes - 9 month of growing my hair post chemo, I suddenly have a bald spot down low on the back of my head! I actually found one of my curls on the bottom of the shower last week and it totally flipped me out. He said it has seen it happen in only about 5 of the cases he's worked on. They put a little donought under our heads during the surgery. I know when I woke up in ICU I was complaining that the back of my head was very numb. It lasted for a day or 2 I think. I found the curl and then the bald spot about 2 1/2 weeks out. When I showed it to him, he pretty much took full blame for it - felt really badly. I suggested that wearing headbands all the time may have contributed, but he shook his head kind of sheepishly and said he didn't think so. He said they move you around throughout the surgery in different ways (I presume to keep blood flowing and limbs from going numb) but even so sometimes something of this nature can happen.



I found this online: "Pressure alopecia. This form of hair loss after surgery is related to prolonged pressure over an area of the scalp, causing localized loss of hair in just that area. Pressure alopecia is rather rare, but is known to occur occasionally after very long surgical procedures (many hours) where the head is kept in one position. A similar type of hair loss can happen in special circumstances like heart surgery using the heart-lung machine, where blood flow throughout the body, including the scalp, may be decreased."



So it does not happen often, but something to be aware of in case it happens. The bright spots here are (a) my hair hides it pretty well and (b) it is starting to grow in again.



I have to say that I have NEVER experienced the wait time I did this past week with him. We are usually right in and right back out. But he does take his time with you once you are in there, so I assume there were people before us who needed more time, more reassurance, whatever it was. Also, since he was on vacation the week before, perhaps he had lots of patients to catch up on. How are you feeling about him so far, Faith?



In other news... 4+ weeks out and restrictions are lifted on bras (anything goes - even wires) and caffeine is a-ok again. I can sleep however I'd like. He even said (when I asked) that sex is ok but basically don't go crazy and actually said can't be on top because it uses your core muscles more. My girlfriend was with me and she said, "So no hanging from the chandelier then....!"



I also asked about the binder vs garments like Marena and he said it would be fine sometimes. He even said Spanx would be enough (my concern was being able to wear some of my pants for work.) I am curious what you ladies think about Spanx/regular girdles vs the Marenas. Should I dole out the dough and get it?



Jeannie