A bit more timely update – 1 month pre-swap surgery checkup

So, now I get to make an exciting post and update from Wednesday’s post.

I had my final pre-surgery checkup with Dr. Lynch Wednesday also.  I’m pretty sure the biggest reason it was scheduled was as a mental health check-up ;). I’m exaggerating a bit, but yeah…

In preparation for this appointment, I had my little notebook FULL of questions to ask.  Some of those questions were repetitive from July’s appointment, on purpose, because let’s face it I wasn’t in a frame of mind to soak in the medical and technical details during that last appointment.

My wait was more normal.  So that helped.  I was just a tad nervous about not having Shawn along this time, worried I would forget to ask something he might want to know, but it wasn’t causing me any anxiety, I’ve been to several of these things on my own now.  I still get butterflies but only momentarily.

I was plopped in an exam room to change into the usual top-only-exam-gown. As I sat down to wait I poured over my three little pages of tripled spaced questions, to be sure I could do this mostly from memory, and just use the notebook at backup.  Not 5 minutes later Dr. Lynch knocks and walks in, with his usual jovial smile, asks how I’m feeling today, is everything good, etc.  I joke that I am much better this appointment than I was last time.  He snickers and says, “well good!” and guesstures to the notebook still in my hand, asking “so what questions do you have for me today?”  I was caught off guard, the reason I think this appointment was just to calm my nerves…Dr. Lynch didn’t even do an actual full physical exam this time, he skipped that and was ready to just start right into the Q&A.  As I stammered out my response, trying to explain and apologize at the same time that I would probably be asking some of the same stuff he had already told me in previous appointments, he replied, “Oh, that’s totally okay, its a lot to take in even when life isn’t crazy. I want you to feel like you totally understand all of this.”  Ok, lets go then… 

Yes, I am totally good to go for my already scheduled date, October 17th at 7:30am (first surgery of the day for Dr. Lynch), with a Pre-Surgery Testing set for Oct. 16th all at Central Baptist Hospital.  I report to Registration at 5:30am (ugh), for Pre-op, surgery at 7:30am, planned for 2 1/2 hours in the Operating Room, another hour or so in the Recovery Room and then released to head home by noon.  No overnight stay.

What will my post operative limitations be?

About the same as the original mastectomy and expander placement surgery, but probably longer.  No lifting any weight and no overhead movement of my arms for probably 6-8 weeks, due to needing to totally reconstruct the “fold” of my left breast, and the incision point be at the base of my breast where a good deal of skin stretching happens when you lift your arms above your head.  If I heal faster and better than expected then that time line will be decreased.

Am I okay to do a 5K walk on the 21st, just 4 days after the surgery?

I explained that I had wanted to participate in the Susan G. Komen Race for the Cure that day, but I would be okay missing it this year if its not good for me to do that soon after the surgery. – Dr. Lynch was excited that I was planning to do that and even said walking is something he is going to want me to do immediately afterwards anyway to keep blood circulation good and clotting to a minimum, just NO jogging or speed walking, nothing that would cause my chest to “bounce” or get jostled.

Do I need to have a bra with me the day of surgery, to wear home?

No, but I do need to have a soft comfortable sports bra at home to wear as soon as the dressings come off.  Due the left breast needing extra support as it heals. After that 6-8 weeks, any bra I like is good to go.

What arrangements should I make at home for sleeping and resting (special positions)?

It will be a good idea to plan to sleep on my back slightly inclined again, just as after the last surgery, but I shouldn’t have to sleep that way as long.  The muscles and such won’t be as sore, as they are already stretched out, most of the soreness last time came from the muscles being separated and then stretched by the expanders.  Already separated and stretched this time equals less pain.  Once I feel comfortable sleeping in a normal position again, I will need to be sure to sleep on my right side only if I sleep on my side.  If I sleep on the left side, my left implant could end up shoved over to my armpit area on that side and that wouldn’t be good.

What kind of follow-up appointments should I plan for?

My surgery is on Tuesday, he would like to see me back two days later on Thursday, but if its too much trouble to get back to Lexington on Thursday then he could schedule it for Monday.  I told him Thursday would be fine, I would have assistance with me that day anyway, and we can make it to Lexington just fine.  After that two days out follow-up, I will then have one after a week.  At that appointment we will discuss any other appointments needed.  Seems there are no drains and no expansions this time the frequency of follow-ups will be less, unless there are complications, of course.

What incisions should I expect?

One on the right breast, in the same location as the mastectomy scar.  One at the fold of the underside of the left breast, not going to use the same incision site as the mastectomy, due to radiation treatments in that area.  He motioned along each area with his finger, so I could see exactly where they would be.

Will you be removing the freckle that you were watching?  And, what incision should I expect from the PORT removal?

He examined the freckle then and agreed that it hasn’t changed at all since my mastectomy, so its fine to leave it alone and just continue to monitor it from year to year.  He will use the same incision point that Dr. Bowling used for removal of my PORT.

Only 1 “new” scar this time.  Yay!

Are there any of my meds that I should NOT take that day, or stop earlier in the week?

He asked me to list them all off for him.  All were just fine to take right up to that day, but I will need to skip them that morning due to “no food or drink” past midnight the night before surgery, for anesthesia.  No ibuprofen or aspirin products for at least a week beforehand though, just in case I use those for pain relief /headaches, and I do sometimes.  So I need to remember not to take those that week.  They cause excess bleeding, and that’s not good during surgery.

As usual, when I started to slow down on the questions, he made sure that I understood everything we talked about, asked if I had any left in my notebook that I missed, and then said not to worry, “This is what I do, you’re in good hands and I’m sure you will be pleased with the end result. I already have several different implants ordered, slightly varied sizes and styles, and I will have them all with me in the O.R. that day, so I can be sure the RIGHT one is used to have the best outcome.  I will probably be putting a slightly bigger implant in the left side just to balance them out, that’s usually what happens in these surgeries after radiation.  And I will be adjusting the folds in both sides, slightly higher on the right and much lower on the left.”  He went on to explain that he’s certain that the skin that was used to form the “sling” under the expander has fused to the expander as part of the tissue encapsulation, so he will have to do some adjusting there.  That side will be getting a lot of attention, so it will be the most sore afterwards.  It will be almost starting over on portions of it.  That’s why the 6-8 weeks limitations.  He wants it to have plenty of time to “set”.  He also said he will take all the time he needs during the surgery to get it right.  The schedule is for 2 1/2 hours, it might be a bit less it might be a bit more, but nothing as long as the mastectomy surgery, but long enough, no rushing away with “good enough”.

I left there feeling very confident and excited about my surgery.  Ready to get this last stage started, and confident in my surgeon’s skill and care of what I needed, both mentally and physically.  He is definitely a GOOD Breast Cancer surgeon!

 

1 year Breast Cancer Surgeon Checkup and 3 month Plastic Surgeon Checkup – July 14th

Sorry, this one took me awhile to even WANT to type out, then life happened once I did want to and today I finally had the chance to finish it up for posting, its mostly a rough draft, just had to get it on out there:

Updates From 1 year Breast Cancer Surgeon Checkup and 3 month Plastic Surgeon Checkup

So, this past Thursday I had my 3 month check up with Lynch AND my 1 year checkup with Dr. Rogers my Breast Cancer surgeon.   Tuesday, I started having some real issues with anxiety creeping up on me for my appointment with Lynch.  I didn’t really figure out the root issue until one of the times I popped awake in the middle of the night Wednesday.  I don’t remember ever feeling quite this way about my appointments with him  There were other nervous times, in fact I get nervous before most of my appointments still, but Lynch is one of the docs I look forward to seeing because I come out feeling comforted and bolstered with some real HOPE and confidence to keep me afloat until the next appointment or surgery.  I found myself aggitated and irratable and easily dropped into tears.  My epiphany Wednesday night…I realized that I was scared that he was going to see how much more the left side of my chest has pulled and squeezed up my left expander, and then tell me that the only thing to do was to hope that the scoring procedure he would use at the implant swap surgery worked.  I was afraid thathewouldn’t have anything else to offer me, that I would be stuck with a severe difference between my right and left breast shape and location for therest of my life.  I was also afraid that we would need to cancel or put off my surgery for another year.  You see, I have realized over the past week and a half that part of my “worries” and image issues have stemmed from something that I thought was all just in my own head…I think my left breast area is still shrinking, still lifting and squeezing the expander even further.  Maybe it wasn’t really, maybe it WAS just all in my head.  Either way, I was having a really hard time seeing how ANY surgery could ever make enough of an impact to get me even close to “normal” looking at this point.  Yeah, Thursday morning wasn’t a good morning.  I was full of anxiety and worry.  I was so consumed by it that I didn’t think to get down on my knees that morning to pray.  I did say some little panicked generalized prayers in my mind as I went about getting everyone ready to head out that morning.  “Please help me hold it together today”, “Please help me be able to talk to Dr. Lynch without becoming a blubbering puddle of tears”, “I’m so grateful Shawn is going with me, but please help me to not make him think I’m going crazy”.  Stuff like that.  I was so consumed by it that I was having a hard time even wanting to make casual conversation on the drive there.  I remember thinking, I’m going make Shawn worry about me if I don’t talk about something…but I couldn’t pull myself out of that cloud my head was stuck in.  I couldn’t even figure out a way to talk to him about this yet…somehow if I did, it was going to make the image I had of myself real, because then he would see it too.  How could I do that to him, to myself.  After all we were just joking around about nipple prosthetics, tattoos, and such a couple weeks ago ( the icing on the cake, the final step in reconstruction).  Now, I would be looking at taking a step back into the major stuff again, letting the “fun” part of all of this slip away again.  

We made it to the parking lot, I held Shawn’s hand while we walked into the building.  We had a longer than normal wait time (new office staff in training, didn’t get my file from the printer to the “ready” folders).  That didn’t help my sanity any for sure, but in a way it did.  I was able to grapple my anxiety through my frustration and speak up for myself to get things rolling.

Once we were back in the exam room, (waiting longer than normal once again, as Dr. Lynch was now with the two patients who came in after me), there was alot of silence mingled with joking about implants (they have a few on display and literally tell you to feel free to play around with them in the decision process).  During one of these silent times, my nerves got the best of me.  I am not sure exactly what part of our joking got me going, but I was suddenly weeping while I sat on the exam table in my hospital gown, telling Shawn all about my fears, watching his eyes register and return the concerns I had been having but also trying to help me remember that we needed to talk it out with Dr. Lynch, asking him to re-explain the procedure he hoped to use to get that capsule around my left implant to release.

Just as I was trying to get myself composed again, Dr. Lynch knocked on the door and came in.  My face was still teary and red.  He was not used to that face on me, remember I’m usually one of the more upbeat, eager, and stable patients he has.  His usual jovial face turned to concern and he asked if everything was okay.  I began unravelling all of my concerns and worries about my appearance and my surgical outcome.   And then my frustrations with how little progress I’m making on the physical therapy and such. I guess the two of them could kinda see where my mind had gone…I thought I would be done with this stuff by now…Dr. Lynch reminded me that this reconstruction business is ongoing.  He also explained to me that he had more “tricks up his sleeves”.  He started out with the expanders and implant plan as plan A, hoping for the best outcome, but he knew radiation might change that so he has plan B and C held in reserve for that.  He explained that he still thinks the scoring method with work, but even after that he plans to do some Fat Grafting to create a more natural shape; and if the scoring method doesn’t work the Fat Grafting will help with that problem as well.  “There are options, I’m not going to leave you deformed, I wouldn’t be doing my job if I did.”  

In the course of this discussion, I did find out that my tear drop shaped implant isn’t an option any more, plus a couple other “plans” changed as well.  I left his office a bit less distraught.  I was still worried and still anxious about the “unknowns”.  I was still super bummed about still having possibly another year of processes and procedures to go through until I was “me” again, or at least as close to “me” as possible.  But, at least we had had a good talk, I understood I wasn’t STUCK with my new deformities, and I had a bit of Hope for that area of my life again.  The all consuming anxiety was set aside.

Update: September 14 – I have since realized in my own mind that the issues I have had with my irradiated skin is the reason he didn’t just go for a FLAP or DIEP type reconstruction straight out.  If I had gone through a tissue transplant to recreate my breasts, that tissue would be damaged and deformed now…the expander has helped the original tissue take the beating without the major deformation. No matter what the height difference is, its still in the correct and malleable shape it needs to be for the permanent reconstruction to be done.

Todd Family Reunion – LOVE them!

As we were reunited with my husband’s extended family this past weekend, I was reminded again and again of how much I love these people I have married into!  I have had the joy of being part of the Todd Family Reunions for 21 years now.  Our first was a few months after Shawn and I were married in 1996.  These people pulled me in and made me feel “at home” with all their jokes, loud laughter, hugs, music, socializing, and such.  I was officially part of the family the day they met me.

Through all of these years I have had much joy at the sight of each of them every year or two.  Shawn’s aunts and uncles and cousins are my own.  Even his grandparents loved me as their own.

Why do I mention this on here?  Well, as you read in my last post, I was having some body image issues last week.  Those issues spilled over into some nervousness about seeing all these family members again as well.  So much so, that I am pretty sure I got a batch of hives on my neck (the exact spot as I did during herceptin infusions following radiation, my neck).   It may have just been stress, but ya know, that’s a stressor too.  It was foolish to even worry about it…that was reaffirmed to me each and every person I greeted at the reunion.  These people, my husband’s family, have cheered me on, sent me cards, read my blog posts, and never once in my 20 years with them have they ever judged me or anyone else in our group by their appearances…why would they start now.  Being with them this past week was the best medicine possible for my body image anxiety “flair up”.  Being shown love unconditionally is good medicine.

Thank you Todd Family for being who you are and for loving me and my family so completely!

An extremely busy week, and my first two days of NOT having to go ANYWHERE…

This post will be another super short one, sorry…I have tons of things rolling around in my head to write, they will just have to wait for next week.  I have had a crazy week full of a my second to last Radiation treatment Thursday morning, routine checkup with Dr. Lynch on Thursday afternoon, “Graduating from Radiation” Friday morning (complete with a sweet Graduation certificate signed by all the nurses and staff at the Radiation office), a 6 hour emergency room visit for my husband on Friday night for severe abdominal pain (which included a CT Scan and diagnosis of Diverticulitis for him), driving myself and the boys to Berea to pick Julia up for a Fall Break at home on Saturday while worrying about a hubby at home in pain who insisted it was okay for me to go and I couldn’t do anything else for him at the house, church on Sunday while worrying about my hubby at home in pain still, doctor appointments for him on Monday, an x ray for a bowel blockage for him at the same time as a routine heart ECHO for me on Monday (yes, both Coffmans adults were at the Frankfort Hospital Radiology Department on Monday noonish), a follow-up appointment with Dr. Smith from my BYAG procedures on Tuesday morning, knocking around in Lexington for a bit before riding along with my mom and William and Julia before taking her back to Berea Tuesday after my appointment, phone calls to doctors offices to get new appointments for him on Monday and Tuesday and Wednesday and Thursday (another perk of having “government insurance”, all the “good doctors” don’t take on new patients with Medicaid and those offices that do often have inexperienced, limited, or incapable staff), a routine Herceptin Infusion for me on Wednesday, running the planning portion of the Scout meeting Wednesday night with the assistance of our Scouts and Bro. Helferstay, and lots of pain, antibiotics, and liquid diet for Shawn all week. I have also been asked to speak in church this Sunday, which I welcome.  But, boy am I glad that God knows how much we can handle, because if this had all hit while I was still doing radiation treatments, or any other time in the past 10 months, yeah that would have been too much.  But as it is, I have been on such a rush from no longer having to go to Radiation treatments, and having most of my energy levels back that I have been a real trooper if I do say so myself 😉  I have been taking care of my family and writing my talk, which I plan to post on here after I present it on Sunday.

Updates:

My burns are much better, nothing left in my underarm area, breast area, and bra-line.  Just a slight tanning.  Then my collarbone and neckline look MUCH better, no more burn, just a kind of scaly, scabby layer that is gradually peeling and washing off in the shower.  Even my blackened skin on my neck is fading.  Sorry about the lighting difference in these pics, but you get the idea.  I should have taken a picture a couple of days ago, I really looked like I had lizard or snake skin across the largest burn on my collarbone.

I still have some soreness in the muscles around my underarm and across my chest on the left side, but I am able to do my stretches now without feeling like I’m going to tear something.  I also have some tenderness in the area where my arm lays across my ribs on the left side.  I have decided after talking with Dr. Lynch this past week, that its where the functioning nerves meet up with the deadened nerves…they are just overly sensitive in that area.

My hair is now a bit over an inch long.  I’m going to have to trim my “race tracks” on the back of my neck soon, lol.

I have an odd rash that’s almost like bug bites and pops up off and on.  I talked with my radiation nurse about it, we thought it was an allergic reaction to a new sunscreen I started using on my arms, ear, and neck.  After using benadryl cream and hydrocortisone, it still didn’t go away.  So, I talked with Dr. Ari about it this past Wednesday (at my Herceptin Infusion).  He took one look at it and its location (mostly on my left arm from wrist to mid-upper arm) and said it was a reaction to sunshine caused by the Herceptin in my system.  He asked if I had been driving myself alot this past week, and then confirmed that yes indeed it was a reaction to the sun from the driver’s side window.  The sunscreen may have added to it, but probably only because the skin was already irritated.  So yeah, one more reason for me to avoid direct sunlight on my skin right now, and to wear hypoallergenic sunscreen.  I have probably looked pretty comical over the past couple of weeks leaning away from the window or pulling my shirt collar up under my earlobes while driving.

My Heart Echo results came back all normal.  Good news.

My Herceptin infusion was a breeze.  I am to start taking my Tamoxifen again, with the instructions to stop 1 week prior to my Hysterectomy and Pelvic Floor Reconstructive Surgery (HPFR from here on out), then start up again 1 week after surgery.  I am having some severe cracked skin issues on my right index finger and a crease area between the ball and arch of my right foot on the outer bottom edge.  So, I am using some heavy duty creams at night and band aid with Bacitracin during the day.

The HPFR surgery has been scheduled for Nov. 14th, with a Pre-op appointment with Dr. Tovar on Nov. 3.  I have been instructed to keep a notebook on me at all times to write down any and all questions I have about the surgery and recovery and such, and bring them to my appointment for Dr. Tovar.  Yeah, I already do that with all my other doctors 🙂 It will be my last chance, as he really doesn’t get time to do much talking the day of surgery while I’m still conscious.  The surgery will be Laproscopic.  I will have a one night stay in the hospital, then home to recover.

Dr. Lynch saw me with the burn on my collarbone, and again mentioned that it would probably be 9 months to a year before I get to have the implant swap done, but that I would have a 3 month checkup in January, and if my skin is healing as well as the rest of my body has been we will reevaluate the timeline for the swap. In the meantime, lots of lotion/ointments, use the Radiaplex until my follow up with Dr. Carlsen on Nov. 10th, then good healing lotions after that. It’s already worked wonders.  Bringing my thoughts back to blessing I had a couple weeks ago (have confidence in my bodies ability to heal)  I still have a 15 lb. restriction for now.  My right implant has become a bit “loose”, it’s not a worry for him, but as soon as my burns are healed, Dr. Lynch wants me to start wearing an underwire bra for better support.   We think it might be due to my lack of stretches the past three weeks, letting the muscles get lax.  So, yup, stretches are a must and extra support too.

I have been able to get walks in for the past three days, and stretches in as well.  It’s hard to get back in that routine.  I still have to make myself take a nap in the afternoons.  They aren’t a necessity per say, but I feel it at bedtime if I don’t.  Shawn is doing better as well, he’s back at work, still in pain (but its less severe, and manageable), he finally had a good experience with a different PCP yesterday (very informative), is continuing his course of antibiotics, and he has an appointment with one of the best GI doctors in Lexington on the 26th.

I thoroughly enjoyed being “stuck” at home yesterday, and am enjoying the same today.  I have used up a bit of my cleaning time writing this post and will be using up more of it finishing my talk.  So, my house isn’t getting back in order quite yet, but I can feel it happening a little at a time, and with it, my sanity is returning.  🙂

 

Checking – in

I have been busy with my college girl and her preparations this past week.  We did the whole move your child to college thing yesterday.  They don’t allow freshmen to have their own cars on campus, and suggest that they stay for the first 5-6 weeks to become integrated into the community.  So we won’t see her for a few weeks, but she has a good church family there and has already made some good fast friends and has a seemingly awesome roommate.  It was a good day.

No real doc appointments this past week.  I did have a good physical therapy appointment.  Basically, my therapist told me that I no longer need to be seen in the office.  I have worked on my own so well that she can trust me to continue to improve.  My range of motion has improved from 18 degrees to 45 degrees in my left shoulder, and much better than that in my right. My strength has also improved greatly.  I am also past my soreness as well from all the expansions, so I have been able to do more too.  My weight restriction has been bumped up to 20 lbs.  Which is fairly close to a safe average weight lift for a woman my age anyway.  I still have instructions to continue with my stretches twice a day, everyday, with an increased resistance band to begin using this week for strength training in both arms.  My new instructions are to give her a call if I have any type of pain or swelling in either of my arms/shoulders/hands and to continue to listen to my body…don’t push beyond the comfortable point.  As I begin radiation therapy, this will be especially important.  I need to continue my stretches, to retain mobility and help the tissues stay resilient, but need to be “easy” on them so I don’t tear anything as they will be in a weakened state.  I have lost a few pounds but mostly inches while doing my stretches and walks each day.  Julia says I look like a ballerina or dancer getting warmed up for a practice, I’ve started stretching my legs out at the same time (toe-points).  It feels good, but I am careful to not decrease my calorie intake at this point.  I’m not supposed to “try” to lose weight right now.

I have a “checkup” with Dr. Lynch this Thursday.  It was meant to be a mid-radiation checkup.  I’ve decided to keep the appointment, even though I haven’t actually started radiation yet.  I have a couple of questions for him that would be better asked in person.

I expect a call from the Radiation Oncologist this week, as it will be two weeks from my Mapping/Simulation this Tuesday.  The good ole holding pattern.  It’s been good timing all around though, I was able to have this whole past week to really focus on my daughter and this new stage in her life without adding my daily appointments into the mix.

The timing of everything has really, really been amazing…Shawn will even be back HOME to stay after this week, so I will have him here when I start into Radiation and when I don’t have my live-in-girlie to help in the evenings.

Must-Haves to Prepare for Bilateral Mastectomy Surgery (gleaned from other blogs and websites and my own recovery experience) – UPDATED see Pink

I have compiled a list of things that seem to be the most recommended items and courses of action immediately after bilateral mastectomy with reconstruction (and have now included my own personal input from my own surgery and recovery):

Medical Recliner chair – the kind that lift for you, I have a rocking recliner at home, so that’s good enough for me – check – Only a necessity if you have a TRAM reconstruction afterwards, or if you have weak tummy and leg muscles.  I spent most of my recovery on the couch, sitting with my back to the arm of the couch.  But the regular recliner worked just fine as well.  

Small table for next to the recliner – check

Pouch belt for the drainage bulbs – ordered one from CureDiva – got lucky and it was on a good sale, at $16.19 with shipping.  https://m.curediva.com/post-surgical-drain-belt-shower-satchel.html  – check – The hospital should also send you home with pouches that velcro to your dressings and bandages, you can use them on your bra after the dressings come off also.  But, have a belt ready at home for those days when you don’t really want to do the velcro thing.  This particular belt came with a special pouch for showers, super glad I had it.  

Shower Lanyard/ Pouch for Drains – check, comes with the Pouchbelt

Post Surgical Breast Pads – might be provided by surgeon/hospital –http://www.drugstore.com/curad-post-surgical-breast-pads-one-size-fits-all/qxp576660?catid=184355 You probably won’t need these, the dressings that my surgeon put on me took care of any seepage, but I really didn’t have any.  Don’t spend money on them, the nurses should send you home with plenty of sterile gauze pads, ask for them if they don’t mention it. 

Stool Softener (Senokot/Sennosides NOT Colace) – start taking a couple days prior surgery to counteract Anesthia and pain killer effects – check – Definitely need this!  Glad I took a nurse-friend’s advice, my nurses were too 😉

Bendy Straws – for in the hospital and at home – check – Only use these in the hospital (they provide).  If you want to recover well and quickly, start using those arms to lift your cup to your mouth.  It’s not that much weight.  

Big cup with screw on lid, straw included – for at home – check, gonna borrow Julia’s for a couple weeks – Just used a regular cup, no need for the lid and straw

Chapstick/Lipgloss – check

Hard Candy – to combat cotton-mouth – check – Definitely needed these, especially in the hospital, Don’t let it replace water, you want to drink lots of water and eat lots of ice chips, it helps you heal more quickly and get home and back to “normal” sooner. But, you can only drink so much and the candy was my go to at that point. 

Backscratcher – got kids – check

Wet Wipes / Facial Wipes – for freshening up during “no shower” time – check

Sponge on a stick – I didn’t need one, but you might

Two small pillows, for under your arms – check – Definitely need these, make sure they are slightly squishy, not too firm, as your sides will be sore.  You just need something thicker than just your clothes to cushion your arm and sides.  Have a friend who sews, even beginner level?  Ask them to make you a set.  The dimensions I used:  2- 8″ x 10″ pieces of soft material, any color but have fun with it.  With a 1/4″ seam.  Will make a 9″ x 7″ pillow.  I had two of them made up with a 3rd but smaller one that I used under my seatbelt.  These will come in handy across your chest during reconstruction expansions as well.  

Extra Pillows – for car ride home, under knees, for propping up while sleeping in bed, to place between chest and seatbelt, brace for bumps in road – Bought new ones at a good price, make sure they have good loft, you’ll be using these alot, and hey, who can’t use new pillows in the bed 🙂

Wedge – for sleeping propped up in bed (reduces discomfort and easier to get up) – just going to use a super big pillow folded in half – check – If you can get a wedge, go for it, if not several pillows piled just right or one extra extra large one will do just fine.

Post Mastectomy Bra – provided by hospital or Surgeon – check – Make sure they give you one BEFORE you leave the hospital.  This one is a must and they all provide them.  If the hospital staff hasn’t given you one by the time your surgeon comes in to check on you, ask your surgeon about it, they will know how to get ahold of one.

Tank Tops with a Shelfbra – best for varying size while healing and prepping for permanent implants – check – I bought some and used occasionally, but found them really hard to get on and off even after several months of recovery.  Anything you have to stretch out as you put it on isn’t going to be easy enough, and if you are having Immediate or Immediate-Delayed Reconstruction you will need an actual bra for support, the shelf bras didn’t provide enough for me. I much prefer to use the Front Closure Sports Bras, be sure to get the right size for around your ribs, but a bit loose in the cup for expansions or pads.  Here is the brand I preferred http://www.walmart.com/ip/FAST-TRACK-Fruit-of-the-Loom-Comfort-Front-Close-Sports-Bra-2-Pack-Style-96014PK/23091827?action=product_interest&action_type=title&item_id=23091827&placement_id=irs-2-m2&strategy=PWVUB&visitor_id&category=&client_guid=cf004101-c56b-4b62-a3f4-b35883e17fe6&customer_id_enc&config_id=2&parent_item_id=13997192&parent_anchor_item_id=13997192&guid=ab71cc36-64a3-4cc0-8278-e999f6fa5c90&bucket_id=irsbucketdefault&beacon_version=1.0.1&findingMethod=p13n, They are cotton (which is a necessity if you are doing radiation post mastectomy), and fit easily with most necklines (even my new cute shirts), and they were inexpensive enough that I knew I could replace them easily if I needed a size bigger in a couple months, and you can buy them at almost any department store. 

Bra Enhancers – optional – I bought Tanks with pads in them, used them for the first week after my dressings came off as my enhancers over top of my surgical bra, but didn’t need anything after that second expander fill, my doctor was pretty aggressive with the fills.  If you will have any length of time between the surgery and your reconstruction I would suggest getting some enhancers to go inside of front closure sports bra, your insurance should cover them as well, but cheap and easy works too.  I didn’t think it was going to be a big deal to me, going out in public with “nothing up front”.  But it ended up being, I wanted those pads for the rest of that week.  Have them just in case.  

Spray on Deodorant – check

Button Down Night PJs – (large buttons due to fingernail issues) – check – Get some that are really soft and comfy, that are easy to pull up and down and are loose fitting both on top and bottom.

Medium thickness Robe – check

Easy slip-on shoes – check – You will need these, you will not be able to tie your own shoes for quite awhile and it can be tiresome and humiliating asking someone else to do it for you. These are a must for expansion appointments as well, you will be sore after each one, sometimes immediately, other times for the next couple of days.  Find a pair that are good for walking in, as they will tell you to take a 30 minute walk each day after the first week.  

Button/Zip roomy shirts – check – You can find some good ones at Goodwill for your lounge around the house ones (first week). Once you feel up to it, go out and have some fun getting some super cute, “girly” ones.  I’m not “girly” and it helped me.  Being bald and no chest leaves you feeling not so feminine. So it’s important to wait to buy these after surgery, your “fashion-style” will change.  Make sure the shirts are easy on and off. After the first week or two they don’t have to have buttons or zippers as long and the neckline is nice and round/big. It will be a few months before you can or want to wear a fitted shirt, so make room in the budget for a few cute, blousey, or tunic style shirts. 

Zip up hoodie or jackets – check

Protein Shakes – not a necessity unless you have issues getting enough protein in your diet.  You will be eating regular foods before you leave the hospital.

Easy foods – Even if you have someone at home with you, neither of you are going to feel like cooking much, and there are only so many meals people can bring in.  Have semi healthy munchies on hand too, stress will make your appetite do weird things, but you need to be eating.  

Meals brought in – online sign-up calendar set up – check – This was a wonderful way to allow people to “help or do” something about my cancer.  The online calendar was handy but you will need to have one or two other people be in charge of it..and be sure to give details of what kinds of food you and your family will actually eat, maybe share some of your recipes for others to make.  

Paper Plates and such – check – This was extremely helpful!  No one had enough energy or brainpower to even think about doing dishes for the first three weeks post-op, and seems we had people bringing food in, we didn’t even have to clean cooking dishes either.

Post-Mastectomy Massage – reduces scar tissue and texture – If you are going through reconstruction there is no need to purchase the ederma style ointments, the massage itself is what breaks up the scar tissue and odd textures, use ointments that are non-petroleum based.  I found a plant based “nipple-ointment” in the baby section, that promotes healing as well as moisturizing damaged skin.  Once you are totally done with reconstruction, your surgeon will give ointment to use for help the scars to fade as well.

Physical Therapy Referral – I cannot stress this one enough!  First of all, do your stretches as soon as the surgeon gives you the okay, and do them exactly as he says to, don’t over do and don’t sluff off.  Even with your at home stretches, you will need professional assistance and guidance to get full range of motion back in both arms and shoulders.  You will also experience the need to have help getting your posture back in line, no matter how good you were at it before the surgery.  Your body naturally curves in toward your chest to “protect” the damaged tissues.  Be sure that you do get a referral, as you will need a therapist that specializes in post-mastectomy rehab.  There are certain stretches you can and can’t do.  Also, they will know the most about reconstruction and radiation therapy issues too.  And again, follow their instructions exactly and diligently. If you will be needing radiation therapy following surgery, be sure your surgeon knows you will need to have PT before radiation mapping…that means you need to have PT sooner than some.

Caregiver/Helper Plan – check – It might be a bit overwhelming to think about all the who and whats and hows before surgery, when you might not know exactly what to expect.  But it will help you post-surgery if you get it all lined out.  Have people ready for the worst case scenario, but verbally tell them that you may not actually need that specific thing, so they can understand if you don’t “let them help”.  You will need someone at home 24/7 for the first two weeks.  You will need rides to and from appointments for 4-6 weeks, as you will not be cleared to drive until a PT has said you can physically maneuver a steering wheel without tearing something.  You will need someone to clean, this is in addition to your main caregiver.  Have cleaning supplies on hand, like make sure your mop is still usable :).  I used a rag on my hands and knees for years, bought a new mop for my helpers, but forgot about a mop bucket for rinsing and squeezing.  Have a list of things you are okay with people cleaning, that way when they get there to do it, all they have to do is look at the list and jump in.  Have back-up ones too, some of your helpers are super fast at cleaning.  And if you are feeling up to it, invite them to sit and chat for awhile…it will do you and them some good. If you have children, you will need them to be “somewhere else” for the first week, maybe longer.  No matter how good a mom you are, healing from THIS surgery requires LOTS of rest and being away from small, energetic, moving bodies.  Grandparents or Aunts and Uncles are great resources for this.  If they are going to be home sooner, be sure to have one person as a dedicated emergency caregiver for the kids, “on-call”.  Or let someone be in charge of coordinating playdates for them once a day, so you can get a good nap in.  

Ouch!!!! And this day did NOT go as planned…

I had Tuesday all planned out and scheduled for lots of things to get done and fun stuff for the boys and exercise for me, and all that jazz.  Well, it didn’t go that smoothly, of course.  I did get my stretches and walk in yesterday morning (although shorter than planned), I did get the boys to the playdate at the park (via Julia and Grandma), I did get Erick’s dress shoes exchanged for a better fitting pair before a cousin’s wedding this weekend (after two different stores), I did feed my family (although I had planned on sandwiches not fast food, and part of it ended up on Grandma’s dime because I was still at the store with Erick), I did get to do my Radiation Mapping w/ CT scan (a lot harder than I expected, and almost too late in the day for my ride to stay with me the whole time),  Julia did get to go donate blood at the local blood drive (although several hours later than she planned), and Wednesday we did get the lawn mowed and the major weeds trimmed (no thanks to the rain that has hit during the times we aren’t busy away from the house in the past couple of days, but a big thanks to our awesome neighbor and an awesome friend from church).  And the CT Scan left me exhausted mentally, physically, and emotionally.  I hadn’t planned for that either.  I was ready to crawl in bed at 3pm, but I still had to go home and be a mom.  Luckily, the kids were okay with leftovers or sandwiches for dinner, seems they had gotten to “eat out” for lunch.  Also, Wednesday was the first day of school for Chris and William, so bedtime was a bit rough, but we made it through….Julia and I as a team, with our helpers (Mom Beaver, Michael Sutherland, and Jesse Dahl (with family in-tow).

My Planning with the Simulator (CT Scan with other lights and such) went well.  The staff at 21st Century Oncology are great!  Again, very pleased with all of my medical staff and doctors I have chosen.  I was taken to a changing room to put on a gown from the waist up, then to an exam room for a short exam and chat with Dr. Carlsen just beforehand, to make sure there weren’t any changes in my size and shape that would be cause for additional adjustments to today’s planning session, and to sign consent forms.  Then off to get prepped for the mapping.  First, the radiation technician made sure that I knew what exactly would be happening in this room.  I would keep my gown on most of the time but other times it would be pulled down.  I would lay on the flat CT Scan table and have to be still for almost an hour.  There would be laser lights at some parts, don’t look directly into them.  The CT Scan machine is noisy, but not as noisy as the MRI machine.  Most of the time she and Dr. Carlsen would be in the “booth” behind the wall.  They would be able to see me, but due to my positoin on the table I wouldn’t be able to see them.  They would however be able to hear me and I them if I needed anything.  If I got anxious or needed a break I should speak out, but try not to need anything if I could help it.  They would have to start the whole process over again if we had to stop in the middle. She would be putting wire tape on me, then Dr. Carlsen would make some ink marks and then at some points they would use a felt-tip permanent marker as well.  She then took pictures of my face and upper torso, for before and after comparisons to be used throughout the Radiation Treatment process, to gauge skin conditions or changes.  Yeah, as usual all of this was a bit awkward, but they do everything as discreetly as possible, and cover back up as quickly and frequently as they can.  Then, onto the CT Scan table which had a special bag of Instapak foam.  After getting me into the exact position needed (arms up and hands loosely clasped across the top of my head, letting my elbows fall outward slightly), the foam pack was inflated and then activated to create a very specific mold of the back of my head, neck, back, arms and sides.   The mold is going to be used throughout all of my treatments, so that they can be sure I am in exactly the same position for each of the radiation treatments.  After they had me positioned, there were more pictures taken and uploaded to the computer.  The radiation tech then put “wire tape” on me to mark different scars and sensitive areas, that helped the CT Scan see those areas.  Then, Dr. Carlsen came in and made little dots (with permanent ink) around the borders of the area they plan to treat, and made sure the tape was placed in the all the spots wanted.  They even marked my “drain holes” (the scars left after my 4 drains were removed) and my port scar too.  They used the ink marks to center the laser beams and CT imager and Simulator over and around the right areas of my body. They then covered me with the gown again, went behind the shielded wall with the computer screens and told me to breathe normally but hold very still (not even talk unless I absolutely needed to because moving my jaw would move my chest and neck muscles).  I was then remotely rolled into the CT scan donut.

I did okay, I just closed my eyes and relaxed.  I tried to breathe, normally.  Normally, hmmm, not sure if I have breathed normally since I found the lump in December.  My chest and shoulder muscles were still tight so it was a bit uncomfortable to have BOTH arms up (I didn’t remember hearing them say both arms had to be up…I might have waited another week to do this if I had).  I don’t know if I dozed off at all, that’s what I was trying to do, or if it just went by faster than I expected.  When they were done with the CT images, the assistant said they were over halfway done now.  They remotely rolled me back out of the tube part of the way, into a framework that had laser lights shining on me from several angles.  She then came out of from behind the wall, asked how I was doing (good) then uncovered me, asked me to close my eyes while she took a couple more pictures of the area.  Then she went back behind the wall for a while again.  They were getting the correct positioning for the beams now, just when I thought I couldn’t handle anymore, I asked if we were almost done.  She asked if I needed to get my arms down for a few minutes, my answer was a definite “Yes”.  But I wasn’t sure I could even move them.  I found out later, it had been about 30 minutes with my arms above my head at this point.  They had fallen asleep to the point where they ached.  It was like my PET Scan ache, but worse because of the muscle damage from surgery.  She had to come and move my arms down for me. I wasn’t allowed to move any other parts, but once my arms were down and I had a few minutes to recover, I was okay again.  But, wow, it had taken me to the brink (I had been counting lights and tiles and singing children’s songs in my head for the last few minutes, trying not to need a break, thinking we should be done anytime now).  After a 5 minute break, she helped me place my arms back into the mold, then went behind the wall again for a bit to complete the laser mapping.  She came out a few minutes later, drew on me with a permanent felt tip marker to mark the areas the laser lights were marking, then asked me to close my eyes while she took several more pictures to be uploaded to the computers (also for future reference of correct positioning of the beams they would use in actual treatments).  She then told me that she was going to be doing my tattoos now.  I remember asking if that was okay, seems I’m not supposed to let anyone “stick/IV/ or Blood Pressure” that side/arm.  She said it would be okay, because it wasn’t actually on my arm.  Then the not so fun part, she made the little ink prick tattoos around the border of my treatment field.  Those weren’t too bad.  But then she had to make three little cuts with an inked automatic lancing device.  You know those little buggers they use to prick your finger tips when checking your iron levels or you sugar levels, if you’re diabetic.  The first one on my left side didn’t hurt because I am still numb there, the next one right at the crease of my arm and my chest hurt and stung like crazy, like a really bad paper cut.  Then the next one was on the right side at the crease of my right arm and my chest, that one hurt even worse. The one on the right side is just for leveling / positioning purposes, the other two are for actual treatment field markings.  I now have surgical strips on those three, and tons of lines and ink dots all over my left chest area.  Fun, fun.  So, yeah after all that I was a bit exhausted.  My body started to react to all the pain and tension, by going into my “jitters” mode.  As she was pulling all the tapes and stuff off of me, I told her I was getting a bit shaky.  She told me to hold on just a minute while she pulled all that junk off, and then she would get me up.  She worked quickly, and again had to move my arms down for me, but once they were down I could move them myself.  Then she helped me sit up, but made me stay sitting on the CT table for at least 10 minutes. She wanted to be sure I was okay, and that I wasn’t going to pass out from standing up too quickly after all that.   She was nice enough to stand and chat with me about my hair and how well I did compared to other ladies who come through their office having done no stretches and physical therapy, and commended me for doing what my doctors told me, and for how long I lasted with my arms up.  In my head, I was thinking if you only knew how close I was to losing it, but it was nice to just chat for a minute instead of feeling like a total invalid because I couldn’t handle this stuff better and didn’t have real control of my own arms.  Yes, I know that’s irrational, but that was  where I was at after that ordeal.  

I don’t have a good enough memory right now, nor did I have a good view of everything they were doing, so I was a bit surprised as I looked in the mirror in the changing room to see 3 very dark lines drawn on my belly/side area, running from the base of my upper ribs straight down to a place even with the base of my lower ribs.  Again, 2 on the left side and 1 on the right side.  There is water proof tape over them, so I assume these are also “tattoo” lines, but less permanent than the cut ones.  I remember her drawing on me, but for some reason I didn’t expect the lines to be that big and dark.  At least they aren’t the permanent ones, well not as permanent as the actual tattoos.  

So, here’s my tally…I have 3 light blue pinpoint ink marks to mark the sternum side of the outline of my left breast, 3 lanced tattoo sites near and in my underarms with dark marker lines running outwards from them in cross-hair fashion (running through my armpits and down my side a bit) to mark the outside of my left breast and as a reference for positioning on the right side, 3 dark marker lines running down my belly (again for positioning), 4 hole-type scars from my surgical drain tubes, 2 – 4 inch scars on my chest from the bilateral mastectomy and lymphadenectomy and reconstruction surgery, 2 “rock hard” water balloons (aka expanders filled with saline) between the muscles in my chest as place holders for my “new” breasts, one two inch scar from the port-a-cath placement, and one small hole-type scar on my left breast from my stereotactic biopsy site.

Now you may question at this point if this was really the “better” route to go…bilateral mastectomy versus attempting the lumpectomy.  Even with all of this and all that I still have to go through, I do not regret the decision I made. I am still certain that it was the right course of action for me.  Remember, we found out in the middle of surgery that they had to take more of the skin on my left breast than they thought they were originally going to have to take.  If it had been a lumpectomy, I would still be going through most of this with a less wholesome outcome. Do I hate that I have ink and scars all over my torso right now?  You betcha!   Do I wonder if getting radiation treatment is right for me?  Nope. I know its the right course.  Am I scared?  Yes!  Its another unknown, another thing that is supposed to do damage but does good at the same time, in a way that outweighs the damage.  Do I sometimes wonder why they don’t tell you how big or ugly things are going to be?  Yeah, sometimes.  But really my doctors and staff have been pretty upfront with me on everything, I’m not sure if my inexperienced brain completely comprehended how dramatic the actual scars and lines and tattoos were going to be, and there really isn’t a way to tell a person that, until they go through it themselves.  Well, most of the time anyway.  Plus you have to remember, these doctors and staff are dealing with some very overwhelmed and sensitive patients.  Thus, the need to have people on hand to talk to someone afterwards as well as before procedures.  Do I wish this wasn’t happening to me?  Yup!  But I also see good coming out of it too.  I am choosing to focus on the good, on the end result, instead of dwelling on the negative and the scary stuff.  Am I naive, maybe, but maybe not!

Post – OP appointment news

Now for a more medical side of things 🙂

I had my first post -op appointment with Dr. Lynch (Plastic Surgeon, handling my reconstruction) on Thursday July 7th.  It was a good appointment.  Shawn was able to go along, which wouldn’t have happened if my surgery had been on the 6th as originally planned (blessing in disguise ;).  Everything is healing correctly, the fluids from my JP drains were low enough in two of them to go ahead and remove those two.  So drain 1 and 3 were removed….that’s a really weird sensation.  The JP Drains consist of two tubes of two – three feet of length each come out of my sides just about 2 inches above my lowest rib and hang down to just below my waist with a bulb at the end of each which I coil and carry in two pouches on a belt.  For those of you Star Trek fans (I have felt a bit like I was being assimilated by The Borg)  They appear to be just kind of hanging there loosely, tied to me by stitch thread, I often worry about accidentally pulling them out.  Dr. Lynch assured me before and after the surgery that would be pretty much impossible.  I now know why.  When he was ready to take the right one out, he said “Okay get ready this isn’t going to hurt, but it’s going to feel really weird.”.  I said, “Okay, I’m ready, no biggie.”  He kind of snickered and said, “Just wait, its weird.”  He then pulled about a foot of tubing out of my side, and I felt it slide from near my collarbone all the way through to the hole in my side.  And yes, I blurted out, “Wow, that was really weird”.  Then laughed at the shudder I saw Shawn make.  I wasn’t watching the removal, he was.  It did not hurt, and I didn’t expect it to, seems I’m still mostly numb across most of my chest.  But I felt almost every bit of that slide.  Weirdest sensation ever, maybe even topping the first movements of my babies in my belly.  I found out later that Shawn was shuddering about what followed the end of the tubing out…a bit of bloody stringy fibrous tissue.  Dr. Lynch said that was normal, it was kind of like the clotting that a bloody nose will do.  The removal of the drain from the left side wasn’t as adventurous, I am still extremely numb due to the axillary (armpit) tissue being removed from that side, and that was where drain 3 was located.  So yeah, there is plenty of length to keep them from just falling out accidentally.  Dr. Lynch then put some gauze and tape on the two open holes and said they might ooze a bit for a couple of days, but would heal up fairly quickly.  They were closed up by Saturday, and seem to be totally healed over as of today.  I still have two drains, 2 and 4.  Dr. Lynch expects to be able to take them out this coming Thursday, at my next appointment.

We talked a bit about the schedule for expander injections. As I mentioned in a previous post, they only put 100 cc in at the time of surgery, due to the lesser amount of skin on my left side.  He decided to wait until my next appointment before putting anymore in my expanders.  He wanted that skin to continue to regain sensation (meaning my nerve endings and other tissues were reconnecting naturally) for another week.  I believe he said he plans to put another 150-200 cc of expander fluid in at the next appointment this Thursday.  How do they do that you may ask?  Well, its similar to my PortACath for my infusions.  There is a special valve on the expander that allows them to inject fluid directly into the expander “bag” via needle and syringe without introducing anything else into the system.

He talked over a couple of things with us about movement and increased my weight restriction to 5-10 lbs.  He also said that I need to go ahead and start doing the post surgical exercises to keep/increase mobility in both of my arms and shoulders.  I am almost back to normal with my right arm, but my left (Lymphadenectomy arm) is a bit stiffer and I am having to remember to extend my elbow all the way out frequently as those tendons seem to be extra tight right now.   He still doesn’t want me “reaching” for things above my head but to do the stretches that will hopefully get me there by the next appointment.  I can do mild housework now.  I cannot lift anything heavy, but have been given the okay to push a laundry basket around with my foot 😉  Still no driving for me, so Julia continues to be my chauffeur, which we are enjoying immensely.

This morning Julia drove me to my post-op appointment with Dr. Rogers (my Breast Cancer Surgeon, performed the Mastectomies and Lymphadenectomy) at Baptist Health in Lexington.  The parking garage was an adventure as always, a first for Julia.  As I suspected this appointment was a super quick and easy one.  Dr. Rogers asked how I felt, when my next appointment with Dr. Lynch would be and what info I had been given from that side of things, took a look at the incisions, said they were healing so well he didn’t even need to do a palpable exam.  He then told me that all the labs came back perfect.  I said, “Great!  Now what does that mean?”  At the exact same time that he said, “So do you want to know what all that means?”  We all laughed a bit and then he explained that all the labs had come back benign, no signs of cancer in any of them.  The chemo had killed all that was there, they were able to get the desired margins of good tissue to clean out all the “dead” cancerous tissue, including the lymph nodes.  He mentioned again that they had taken 7 nodes out just to be sure that they had that margin of safety above and beyond the 5 that had “lit up” in my PET scan way back in January.  I then asked if that meant I would get to skip out of Radiation Therapy, but as I already knew that was a really a question for Dr. Ari.  He checked to be sure I had an appointment with him in the next couple of weeks (27th), and said that all the lab results were shared with Ari and Lynch as well and they would decide about the next step in treatment. Dr. Rogers then said, “Okay well that’s about all I do for you, except for a check-up in a year”.  I told him I appreciated his work and help with my care, that I was sad that we wouldn’t meet again for a year, but glad that I had one less doctor to see.  We had a good laugh, he understood.  Julia and I then gathered our things and headed back out of the office, less than 30 minutes after we had arrived.  That was a great feeling, almost carefree.  We opted to take the stairs back to the car on the 5th level from the 2nd.

So, good news from the docs all around.  And…I made it back to town soon enough to go to the library with my kiddos today, in a cute little outfit that Julia says makes me look like a teenager :).  Back to my old confident self and with a bright outlook from slightly past the mid-point of this cancer journey.

Missing my hubby tonight though, love ya, babe!  You’re amazing and doing what you need to do for our family at this time!

And tomorrow, we venture back into the world of “normal routines” with slight adjustments, as Grandma Jeffries heads back to her home and I step in to help Julia be the Momma for a bit longer while I still get my naps and a chauffer.  Thank you to both Grandma Beaver and Grandma Jeffries for the awesome 2 weeks you have given our boys!

 

…continued

I finally reached my hospital room around 5pm, Shawn met me halfway down the hallway I believe, or maybe in the room, still a little hazy about that part.  He hadn’t eaten since the bagel he had for breakfast, afraid that if he got up to go get something for lunch that he would miss the doctor’s reports during my surgeries.  Dr. Lynch had given him a report just after completing surgery so he knew I was okay and that I was cleared to eat anything I wanted “no dietary restrictions”, as soon as I made it to my room.  My parents were on their way back towards the hospital from Lawrenceburg around that time (3pm-ish) so they offered to pick up some food.  Subway was the order Shawn put in.  The nurses on my floor had requested a dinner be brought up to my room as well.  We figured we could share that until my parents made it back.  After several requests from the nurses, the dinner tray still never showed up, so we just had Subway around 6pm.  Life that evening was kind of a flurry of nurses with meds and nurses aides with blood pressure cuffs, and draining my JP drains, and me getting up to pee (with my pet IV stand in-tow each time), and nurses aides coming to take stats on the amount of urine and frequency.  I was up and about alot to the restroom and back, still receiving IV fluids and drinking lots of liquids due to that good ole cotton-mouth one gets from anesthesia.  The nurse would come in every couple hours and check my pain levels and see if I needed anything.  The later in the evening it was the higher my levels got, my PecBloc was wearing off as well as the other pain meds I was given.  It really felt more like a really sore muscle than actual stabbing pains.  I would usually tell them that my level was about a 3-4, Shawn would then pipe in, “Its probably more a 5-6, she always says lower than what it really is”.   I guess I do…didn’t realize I did that until then ;).  I wasn’t real pleased with the efficiency of most of the nursing staff on the floor.  Out of the 10 nurses and aides I had during those two shifts only two stood out as extremely exemplary.  I really hated to say that, I have been in several hospitals through the years and as you can tell from my opinion of the recovery room staff, I recognize a good team when I see one.  These nurses and aides weren’t.  They would get aggravated with each other, take too long to come back with things they had been asked to bring by from another staff member, not record things when they did come in, etc.  I really felt bad about it, but I was so ready to go home that I really didn’t mind being almost pushed out the door at 10:30am the very next day.  I thanked the nurses and staff who were good to me and tried to help those that seemed a bit more out of sorts or awkward at their tasks.  But, yeah, that wasn’t my best hospital stay. And before you say “oh maybe they were too busy”, there were 6 nurses assigned to 5 patients, with 4 assistants/aides.  Maybe all the good ones end up in Recovery or Maternity, who knows.  I did have a gorgeous view out my windows though, straight across to the Lexington skyline.  The cleaning staff were very kind, happy, and efficient as well.  I liked my chats with them too.  And my two favorite nurses actually came to see me off, thanking me for “being a patient that actually wants to get better”.  And for being so nice and cheerful.

After a decent night of sleep, only being interrupted a couple times for meds and stats, I was awakened by Dr. Lynch at 6:55am.  Checking my incisions, the amount of liquids from my JP drains, loosening the dressings and ace-bandages around my chest, and then giving me some specifics about how the surgery went and what to expect over the next couple of days.  He had decided to put 4 JP drains in, one close to my collarbone on each side, and another lower on each of my sides.  All 4 just under the muscles leading away from the “hole” left by the tissue that had been removed.  The body fills holes like that with liquid, that is a bad thing to be left as is, so drains are the solution.  He also explained that my expanders had been placed as well, with the extra skin pocket to hold them up in place.  They only put 100 cc of fluid into the expanders at this time, due to more skin having to be removed from my left breast than expected.  I would have the 4 drains in until the follow up appointment the next Thursday.  I would need to drain them as shown by the nurses at least twice a day, into measuring cups, and record the amounts.  The liquid would change from a reddish color to a pinkish orange color over the next few days and whichever drains had reduced to less than 10 ml per emptying would be able to be removed at the follow-up appointment.  I was to continue taking my Celebrex (usually prescribed for arthritis patients for aches and sore muscles) alternating every couple hours with Tylenol throughout the day for the next couple of days and take my Valium (for anxiety and muscle spasms) and Oxycodone at night to help my muscles relax while I slept.  I needed to sleep on my back, propped up with my arms alongside my body as well, not below, to help with circulation.  I needed to get up and walk at least 30 minutes out of each day, get outside for the walk if I could have a buddy along, to keep from having any blood clots.  He wanted me to move my arms around and away from my sides as much as possible, but only in slow stretching motions and never above my head until after my follow-up appointment.  I shouldn’t drive for at least 3 weeks, more for avoiding sudden arm movements than about meds.

After Dr. Lynch left, Dr. Rogers came in a few minutes later.  He gave me a few details on how my surgery went and as I said before commended me on being such a good patient.  He had given Shawn more details the day before about having had to remove more axillary tissue than planned and there being more breast tissue to remove than they originally thought as well.  The calcified cells (now benign breast cancer cells) were located a lot closer to the skin than was originally assumed.  They warned us about this in some of my mammograms and the MRI, thus our worries about a lumpectomy leaving me severely disfigured in that area.  Our concerns proved to be true, it would not have been a small, simple lumpectomy.  He also told Shawn that the lymph nodes were not easily recognizable at this point, having been subjected to chemo.  So they took out the equivalent to a “bowl full of jelly” around the previously mapped area, with a margin of “good” tissue surrounding it.  The tissue that was removed from my “healthy” breast was also examined and made sure of the safe perimeters of healthy tissue.  All three sections of tissue were sent off to the labs to be examined in more detail, to be sure that all safe perimeters existed and to be sure that all cancerous cells were now benign.

After Dr. Rogers left there was a bit of down time where I was able to change out of my hospital gown, get my IV tubing removed, and change into my own cute PJs and robe that I brought along expecting to be lunch time or later leaving that day.  Dr. Ari popped in while I was eating my breakfast, just to say Hi and ask how I was feeling (again, awesome Drs., he had no responsibility to do anything of the sort for me on this day for this procedure).  Then the nurse popped in and said, okay lets get your checkout paperwork done…Um, okay?  What time exactly were they expecting me to be picked up?  It was only 9am, and Shawn was probably just now waking up at home (45 minutes away), he had stayed with me until 11:30pm the night before and didn’t get home til after midnight.  I mentioned all this to her, she said it wasn’t a biggie, I could stay until he got here, but I could also leave anytime I wanted to.  So, while she gathered my going home packet, I gave Shawn a quick call.  He was already awake and was about to hop in the shower, shewwww.  And as you know, I was home by 11:30am.

I didn’t want to stay home alone while he got my prescriptions filled, so I rode along, I was feeling good enough that we popped into a local fireworks stand and looked around for a bit, then grabbed lunch and headed home for the rest of the day.  I ate lunch, fell asleep on the couch for awhile, then woke up needed my ibuprofen (replaced Celebrex, because of insurance).  A friend brought by some dinner for us about that time too, so we ate dinner, then afterwards my meds were in effect again, and I felt like going for a slow walk around the block.  I was a bit tired when we got back but it sure felt good, and Shawn didn’t let me over do it.

Sleeping that night was kinda awkward and lonesome, I’m used to falling asleep on my side and really close to Shawn.  Yeah, neither of those were possible.  But I did take my prescribed meds and woke up the next morning just a bit sore, ready for my next dose of ibuprofen, but able to move around.  This was when I realized that my c-sections were harder on my body initially than this surgery.  This one, I could use my legs and tummy muscles to move myself around, to get up, to sit down, to roll over, to shift.  This wasn’t too bad.  I sure got tired out easy though.

The first couple of days I couldn’t sleep past 8am, my chest and shoulders and arms were just sore, like I’d been lifting weights or something.  So I would get up, take my ibuprofen get some breakfast and do a few little things.  Then spend a few hours on the couch, getting up from time to time to get a drink or use the restroom or just piddle around.  One morning Julia and I went for a short walk around the block.  The next day was even better less “stiff muscle” feeling and not as easily exhausted.  The next day, I decided I wanted to try for a walk around the big park here in Lburg…1.3 miles.  It was easier than I thought it was going to be, didn’t even get winded going up the hill, but I sure needed a nap that afternoon.  I have been doing really well.  I have been behaving, not overdoing it, my helpers and nursemaids have been making sure I don’t forget not to lift things and not to reach over my head.  All in all I am doing grand.  Thursday morning, I got two of my 4 JP drains removed, YES!  Today, my right arm and chest muscle are barely even sore.  I have been able to shower since Sunday, its a bit awkward still but nice to be cleaner and have that freedom.

I am so grateful that all that insurance crap happened now, because it gave Shawn a whole extra week to be here for my recovery, to be here for my first follow-up, and to be HERE for me.  Now, we send him off tomorrow morning for his hardest part so far, being away from the whole family for a week or more at a time for 7 weeks.

I’m Home…a little behind on the post, sorry

Hello,

I sure thought I had posted that I was at home on Friday morning.  But, alas, I didn’t.  Sorry for worrying anyone.
I was checked out of the hospital by 10:30am Friday.  Dr. Rogers had come in and commended me on how wonderful a patient I was.  I said thanks and then mentioned that I didn’t have much of a choice seems I was unconscious, he kinda snickered and reaffirmed that I was a good patient. After talking with friends and family I realized being a good patient was more about not having any complications during surgery and in the recovery room.   I guess some people come out swinging from anesthesia.  I’m just extremely chatty :).

My surgery started at 7:45am Thursday morning and wasn’t complete until around 3pm.  Yeah, that’s over 6 hours. Shawn was stuck in the O.R. waiting room that whole time.  He says I spent about an hour and a half in the recovery room (not because I needed to, there was some sort of hang-up with the patient wing staff sending a transporter down for me).  I had an awesome recovery room nurse, Tim, who allowed me to Q&A him as soon as I was awake, with only occasional snickers.  He was caring for me and another patient through the curtain to my right.  I was so thirsty.  I gobbled down several cups of ice chips.  Then patiently waited and watched the other patients and nurses around me.  This group of nurses worked extremely well together.  There were at least 8 patients in my section of the L-shaped recovery room, all were being personally cared for and listened to.  I have been in several recovery rooms over the years with my own c-sections and other outpatient procedures with my children and myself, most of the time they were decent-good care, but this group, this group was exceptional.  I wanted to ask Tim if he liked working with these people, but I didn’t want to ask it in a way that would make him have to lie or hurt someone’s feelings, so I asked “How many different departments have you worked in this hospital?”  His answer was almost all of them in rotations.  Then I asked which one was his favorite.   His answer was “this one, by far”.  He had actually been given the opportunity to chose the department he wanted after being through a bunch of others.  He chose this one because of the other nurses and their efficiency and care for the patients and the love of their “jobs”.  I told him I could see it too, and that I appreciated the work that he and his coworkers put into their labors.  I ended up in Recovery way longer than I should have, to the point where Tim felt comfortable walking me down and around a corner to another restroom to “go pee”.  I opted for the wheelchair ride back to my bed, seems it was quicker and would take up less of Tim’s time with his other patients, but I was very much ready to be taken to my room.

The “fun” part of being on anesthesia and painkillers…your memory comes back in pieces and sometimes there are still things missing.   So this post is a bit disjointed and not in a real timeline, sorry.

We arrived at the hospital at 5:30am, ugh!!!! That was too stinkin’ early.  We only waited about 20 minutes to be registered (had my wristband put on).  Something neat about this was a 35 year old woman who did the check-in decided to share her story with me.  She asked how I was feeling, I said “fine”.  She looked at me more pointedly and asked “How are YOU doing with all of this?”  I then looked up from the paper I was signing and told her how I had had a few weeks to get used to the idea and images.  She then shared that she found her cancer at age 32.  Due to her circumstances and diagnosis, she was just now in the final stages of reconstructive surgery.  I would not have noticed if she had not chosen to share it with me.  She was upbeat and confident and did not “look” like a breast cancer patient.  That was so good for me.  I wasn’t having a particularly hard time with my thoughts, but this was an extra boost to get me bolstered for the next step, Pre-op, where they make you put on the hospital gown, attach blood pressure cuffs, oxygen monitors, and the dreaded IV line.  My LEAST favorite part of any surgery, the IV placement, well that and the catheter, but that’s a whole other story not related to this surgery thank goodness. The Pre-op nurses usually prefer to put my IV in the back of my right hand, as those veins are usually very visible and easy to stick.  NOT this time.  The only veins that looked good were on the inside of my forearm, so that’s the one the nurse went for.  So while one really nice and considerate nurse was entering my data into the computer system and taking my blood-pressure and such, the other “not so nice” nurse was attempting to start an IV in my forearm, and NOT doing a very good job of it.  My veins had hardened due to chemo and were being difficult.  The nurses discussed how there seemed to be some resistance in that vein and Nice nurse suggested moving it.  Not So Nice nurse refused and said “well if they don’t like it in the O.R., then they can just move it”.  Yeah, not so shining moment for Baptist Hospital Staff / Patient relations, for more reasons than just the IV stuff, she really was not a nice nurse to her coworkers either.  They decided to leave it, seems there was no evident swelling in my arm (meaning the needle wasn’t poking out the other side of my vein and putting stuff in my arm instead of in my vein).    As I came out of recovery, I noticed a few new bruises / holes in my arm.  Two separate places on the back of my hand, one in the crook of my arm, and then the IV itself being in a new hole just to the left of the original hole accompanied by a large bruise along the original hole.  Sooooo glad they did all that while I was under anesthesia!  The Not So Nice nurse was done with her part for me, and we were left with the Nice nurse and the occasional other staff popping in and out.  Assistant to the Anesthetist, the Anesthetists, Dr. Lynch coming in to chat with us and draw on my chest and talk to us a bit about things and give us time to ask any other questions we might have had, Dr. Rogers popping in to check on us and say good morning and remind us of the details of his part.  It was fun to see he and Dr. Lynch interacting so jovially.  It really cemented the statements we heard of them working together quite frequently and I felt like if anything went wrong or weird they would definitely be able to communicate with each other efficiently enough to deal with it.  They then both left to get dressed for surgery, and Shawn and I were again left semi-alone.  That was a bit nerve-wracking.  Probably more for Shawn than for me, seems I had been given a lite dose of anti-anxiety meds.  The nurse then had me take some Celebrex and anti-gas pills and stool softeners and an anti-nausea patch behind my ear.  I am not sure which order this happened in.  The Anesthetist came in to explain to us this new type of anesthesia blocker that they use for these surgeries called a PecBlock.  Its the same type of medicines that they use to do a spinal block, but its in the Pectoral muscles instead.  It more fully covers the area being operated on, and has been proven to help the patient have less complications from anesthesia and a quicker recovery time.  Well, I guess it worked for me!  They then gave me my general anesthesia and I was out of it.  Shawn says that they talked with us a bit more before they actually wheeled me out to the O.R. but I remember nothing between that and the recovery room.  I have a few bruises here and there on my arms and sides that were obviously from having to be manually lifted from the Pre-op bed over to the Operating table.  I’ve been partially awake for those movements before, for C-sections, so I am generally familiar with those bruises. They didn’t worry me, but hospital staff or surgeons really should tell patients that kind of thing too before going into surgery, that could make someone panic or worry 😉

to be continued….