“Not out of the woods yet”…9/6/16

Yup, I needed this reminder today as my mind starts to gear up to face my next step in this journey, my DIEP flap reconstruction. But, wowyyyy each of these past posts remind me just how far I’ve come in two years. I’m so glad I wrote it down.

Dalynn's Road to Recovery

Sorry, this is going to be out of order, this is a post I started on Tuesday 9/6/16, and just finished editing tonight.

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I think a comment my husband made to our 7 year old this morning kinda sums up a lot of my thoughts over the past few days, well weeks really, but more pointedly over the past few days.  “Mommy’s not out of the woods yet.”

We had a very eventful, productive, yet restful weekend.  Last Wednesday, dear friends of ours went through a very, very overwhelming trauma with the passing of their baby boy to SIDS.  It has been a truly heart wrenching, yet miraculously healing experience for me as I have sorrowed for these dear parents, as I have reminisced about my own experiences of losing babes, while pregnant, and being able to feel just a fraction of the despair and heartache they have been feeling…

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Sheweeee! What a Day!

2 years ago today, I went in for my first of 30 Radiation treatments. It was a cancer-related, doctor-filled day. Fast forward to today, a friend asked when my next appointment was, as I swiped through my calendar I started to panic that I had missed one. Nope, there it was in October! No cancer-related appointments for a total of 5 months!! And it feels good this time, instead of the lack-of-safety-net-anxiety I had last year around this time. Life is good! God helps us heal physically, but also gave us the ability to heal mentally and emotionally as well. I still have my episodes of Cancer-related PTSD, but oh its getting so less frequent and oh so less catastrophic.

Dalynn's Road to Recovery

So I asked, and I received…

I got myself and the little boys up and going this morning at 6am, for school and for a trip to Lexington for some errands and my 3 week checkup with Dr. Lynch (Plastic Surgeon).  Erick and Chris were on the bus by 6:50am, stretches and shower for me done by 7:45 am, William was up and dressed and both of us fed by 8:15am, then to the gas station to fill up Ms. Roadie (our Buick Roadmaster Station Wagon), then William was dropped off at Grandma and Grandpa’s at 8:30am, on to the Scout Shop in Lexington and done there by 9:50am, then to my appointment with Dr. Lynch at 10:15am.  Are you tired yet?  I wasn’t, I was just catching my second wind.  Errands and trips to Lexington are much more exhilarating when you get to drive yourself, after a couple of…

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DIEP surgery date scheduled!!!

Yay!!! I have an actual official date for my DIEP Reconstructive Surgery at Vanderbilt.  December 3, 2018!!!  I don’t know if anyone else noticed, but that’s a year to the day I ended up in the hospital ER for a serious staph infection and lost my left implant.  I didn’t plan it this way, it was the only date Dr. Higdon/Braun had available that month.  Its a bit unnerving, but I’ll take it!!!

I go in for a pre-surgery checkup and mapping appointment with Dr. Higdon on October 24th.

My sister in law asked if I would be accepting help/service this time.  I assured her, as I do all of you, that indeed I will be accepting/asking for help. I will have a more detailed plan of action after my October appointment.

In the meantime, I’m still working on getting healthier and losing a bit more fatty pounds and inches to get to a good stable and happy weight for me.

I am doing the Whole 30 diet with my husband for 30 days, to support him and to help get me past my plateau.  I’ve learned some really interesting and frustrating things and am enjoying the experience so far (1 week in).

The talk I gave in Church today – August 13, 2017

Oh how I loved re-reading this today. Perhaps some of you can use the uplifting too.

Dalynn's Road to Recovery

As I was preparing this talk, I thought well okay this is easy, it’s about blessings we receive for obedience.  And that’s where I got stuck.  I found tons of articles and talks and scriptures about obedience, but none of them really seemed to feel right.  So I clipped pieces of them to use later on in the final draft, still not really sure how they would all fit together.  Then, yesterday morning as I was on my knees praying, because let’s face it, I was panicking (my talk wasn’t written yet, it didn’t even have a real direction yet) I poured my heart out to my Heavenly Father talking about how grateful I was to have been able to do so much this week that was good.  And how I knew that HE knew I had good in my heart with everything I did.  And I asked for Him…

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How do you NOT write?

So, a couple years ago, when I was going through all the major Cancer stuff, I was writing a lot. I NEEDED to write a lot. I also read a lot of other BC Survivor’s blogs, it helped me feel more “normal” about my writing and helped me have the confidence to share as much as I do and confidence to withhold some as well. One particular day, I stumbled onto an amazing blog site written by a fellow Breast Cancer survivor. She was about 3 years out from the Cancer diagnosis, 2 years out from final treatment date, and about 1 year out from her final reconstructive procedure. I loved her writings, I identified with many of the thoughts and feelings she shared, and I yearned to read more and more of her experiences. As I read through chronologically, I had the urge to jump forward, to see how she was doing “today”. I scanned through the titles of posts and pages to find the latest and greatest. There it was, the most recent post…but, it was from several months ago… I pulled it up on my screen and read the very simple and short post. I don’t remember the exact wording now, but she was basically “signing off”. What?!?! Wait!!! I need to know how she is doing with life after Cancer! She did briefly mention the traveling she had been doing, the time she was spending with kids and grandkids, and that she had picked up the desire to try new things. Her life had gotten too busy to keep up a blog about her Cancer life. She wouldn’t be writing anymore. I was devastated and a bit agitated and bewildered. How do you NOT write?!?!

In my all-Cancer-consumed life, writing was my release. Informing people in writing was the way I could “talk” about it without being completely overwhelmed by face-to-face interactions. Putting it to “paper” was the way I kept medical conversations/information/instructions straight in my head. How do you NOT write?
And then, of course, there’s the part of writing being a talent or favorite pastime. When you CAN write and you are helping so many people, how do just one day stop writing?

I obviously moved on with my life, I didn’t get stuck on that one person permanently. But that question, “How do you NOT write?”, has been lingering in the back of my mind this whole time.  I have been so driven, so passionate about my writing. I have loved and hated it all at the same time, but have always felt the NEED to write. Mostly I write for myself, but also for those it might be helping as this woman’s blog had helped me. The blog setting gives me an “audience”, which gives me a focus to help organize my thoughts. It has been helping me sort it all out.

In the past couple of months, I’ve felt something change. My yearning to write has slipped away somehow. Maybe from a lack of personal Cancer-related topics, maybe from stress in other areas, or maybe shear lack of time. When did that happen?!?!

Now, before you worry that I’m dropping my blog, I’m not…yet.  I am still not “done” with my Cancer Journey.  I have more reconstruction to deal with, and keep my support persons apprised of.  I am also still learning how this new life with side effects and risks affects my daily diet, level of activity, and healing.  I still have things that need to be written, just with a slightly different audience, I think.  Though, I am beginning to understand how one gets to the point of NOT writing about Cancer.  I am beginning to see “the light at the end of tunnel” again.  The days when Cancer will be almost only a memory.  Wow, can that really happen?  I am also beginning to see how the book ends.  Another little thought that’s been rolling around in my head, as several people have suggested that I turn my blog posts into a book someday.  Before, I couldn’t fathom how I could do that if I was perpetually adding to the book.  Well, now I can see it coming.

But, for now, I will continue to write occasional blog posts.  Some days the posts will be “re-blogs” from years past, so watch out for those, read carefully before you panic 😉  Other days, I will write a tidbit about life now.  And then, on days not too far in the future, I will write more updates on my reconstructive journey.  So, if you haven’t heard from me in a bit, don’t worry, I’m probably busy living life after Cancer.  I promise I will let you know when I write the last chapter of THIS book.  And never fear, the blogs on the world-wide-web live on and on, past the years of their writers.  So, all this wisdom I’ve gleaned and shared will always be available to those who need it.  And hey, maybe someday I’ll even get around to making it more user-friendly and fancified, lol.

Report from June 12th appointment- Dr. Braun, Vanderbilt

I know you all are used to lots of details from me, but in the interest of getting the information out in a semi-timely manner, I’m going to keep it short.

All good things from my 2nd appointment at Vanderbilt Breast Center!

What you want more?  LOL, okay.

The Imaging Appointment –
I went a bit stressed over having to go through an MRI.  I’ve had one before and it’s not the most wonderful imaging experience I’ve had, and then there was the reading afterwards (yeah, therapy-worthy issues there).  Well, #1 good thing of that day:  it wasn’t an MRI after all, just a CT Scan with IV contrast.  Cool.  I’ve done one of those recently and that’s super easy.   The staff at the University of Vanderbilt Hospital Imaging Center were amazing.  Friendly and good at their jobs, too.  Yay!

  • non-medical related details
    • That place is HUGE!!!!  We were super early, so I drug Mom around several different ways.  Also, at every turn we were met with all sorts of staff (doctors even) eager to help us find our destination.  We must have looked like lost tourists, lol.  I’ve become pretty good at finding my way around hospitals and medical centers as of late, this was a new challenge.
    • The Hospital is literally connected to the University Campus by a courtyard, and not in the way University of Kentucky is set up.  Doctors with groups of students wander in and out of the hospital and the research facilities, dorms, and classrooms for medical majors are right there!  Yup, I’m in good hands.

New Patient Appointment with Dr. Braun, partner to Dr. Kent Higdon –
Going into this appointment I was nervous about my lack of weight loss, and the looming possibility that the Scan results would show something wrong with my blood vessels in my belly, both of which I feared would boot me out of being a candidate for the DIEP surgery that I want to pursue.  Dr. Braun was running late coming from the downtown surgical center to the Breast Center where I see him at.  The Scan results were not in yet, even though it was supposed to be, that’s why I had a 6:30am scan so that the results would be ready in plenty of time for Braun to review them and read them to me in the appointment.  So, yeah I was a bit of a ball of nerves sitting in the exam room waiting and waiting.  Dr. Braun arrived and as I heard him speaking to patients and staff in the halls, I felt a bit of ease settle over me.  He sounds okay, so far.  As he entered the exam room, with the Assistant in tow, he was just as he sounded. A very mild mannered man with just enough age to be experienced, and just enough kindness to have at least a bit of Dr. Lynch’s manner.
Dr. Braun then began our visit.  He apologized if he seemed a bit unorganized he would be talking about things kind of out of order from his usual first visit, seems I had already had a consultation appointment with Dr. Higdon, during which we had already decided on surgeries options for me, and which I preferred.  He then asked if I had any questions about anything Dr. Higdon had talked with me about.  Out it came.

I stammered through my explanation that I hadn’t lost any weight since my last appointment 2 months ago.  Explaining that Dr. Higdon said that I needed to commit to losing 20 lbs, and I have plateaued at 180, sometimes 179.  I continued to explain that I know my increased activity of working on a farm and eating more veggies has helped though, because I have lost inches and FEEL better.  Pants and shirts are fitting more loosely around my waist and belly areas. He anticipated my question, “You want to know if you are still considered a candidate if you aren’t losing the pounds?”  I replied that that was my biggest worry.  He then said, “It sounds like you are trading fat for muscle, which is a good thing.  Let’s look at how close you were to the acceptable BMI limit.”  I was only .2 over the limit of 36 BMI mentioned by Dr. Higdon.  Dr. Braun explained that during the consultation visit Dr. Higdon asks women with a high BMI to plan to lose at least 20 lbs.  If that person comes back for the first official exam visit and scans they know that patient is truly serious about this surgery and will then work to help them find a goal and routines that will help them lose the weight with a general date in mind.  In my case, I am already exhibiting a return to healthier habits and am under the upper safety limit of 40 BMI, and close enough to being under the limit Drs. Higdon and Braun have set in their own practice of 36.  I could have the surgery right now if I wanted to.  I was so amazed by that!  Dr. Braun snickered abit and then settled me down by asking if I wanted to schedule it now, with the suggestion to wait a couple of months until I hit my next plateau.   He mentioned again his amazement and respect that I am doing farm work at this stage of my life.  We talked more about how much of it is manual labor, and how much is in the heat, etc.  We also talked about how long I expected to be working the farm job.  I told him that I was glad he had asked that, because I would really like to continue to work until late October, early November (the end of Market season).  I wouldn’t be able to do that if I had the surgery now. After chatting about more details, we decided it would be good to wait a full month after my last Market date, to let my weight “loss” level out.  So, my surgery will be scheduled for late November – early December, with my next appointment for mapping and physical exam sometime mid-October.  In the meantime, Dr. Braun’s office staff will get the ball rolling on insurance authorization for coverage at their facility.  It can take up to 6 weeks for the approval to be received, better to get it moving now.  Once the approval is received they will call me to schedule my October appointment AND my tentative surgery date!!!!

Here’s where the discussion ended up a bit out of order.  I realized I hadn’t asked about the scans yet.  So I asked, about how the scan results (whenever he received them) would impact my candidacy.  He had not had a chance to review my scans yet, but he would be doing a physical exam in a few minutes that should give him sufficient observations on the condition of my skin, vessels, and nerves to confirm my candidacy.  He felt confident that the Imaging department would have already notified them if there were any worries with the blood vessels, they do these scans for them a lot and know what they are looking for.

He then did a physical exam on my whole torso and my hip area as well.  It was a bit disconcerting with a lot of pinches and pokes and lifting.  After examining the irradiated tissues and my left arm tissues and my armpit area, he did a bit of a pinch test on my belly and abdominal skin and fat.  The good color return was exactly what he was wanting to see.  My c-section and hysterectomy incision areas and scars would not be in the way either.  He asked about my size expectations as well, and agreed to work that in.  I have plenty of tissue for my desired size (the same as I was before, maybe slightly bigger to compensate any weight loss I might have during the healing process). They will be removing all of the irradiated tissue, it’s just not returning to the softness and flexibility it should be for healthy skin.  It is “cooked”.  He commended me for how much mobility I have kept in my left arm, noting just how tightened the tissue and muscles are across my chest and into my armpit.  He also confirmed that they will be removing my existing implant for sure and doing a bilateral DIEP.

When he had completed the exam and made notes in my folder, he asked if I have been given any information on how the actual surgery goes.  I told him I was pretty sure Dr. Higdon had given us some stuff to read, but if he had something to give me I’d take it too.  He also suggested that I spend the next couple of months doing online research and watching videos and getting used to everything from preparation for to recovery from the surgery.  “Not the horror story ones, because we don’t do those at Vanderbilt.  We have the experience and resources to have ironed out those wrinkles so well that people come to us to fix those types of complications from other surgeons. That being said, it’s not an easy one.”  I had no misconceptions on that, but it was good to hear that last phrase come out of the Micro-surgeon’s mouth, too.  There’s just something very comforting about the surgeon being open and upfront about how hard and involved things will be.  Not just a sales-pitch.  The surgery will take between 8-12 hours.  Yeah, that was a shocker to me too.  I will be in the hospital 3-4 days in a private ICU room for constant observation.  I will come home with 4-6 drains.  I will NEED to have a comfortable recliner at home to sleep in for at least the first week or two, maybe longer.  The recliner was suggested on all the Mastectomy prep lists, I didn’t end up needing it then, but for this one its a must because of the belly/arm/chest combination.  So I have a few months to save up the funds and do some major in-store “research” to find THE perfect recliner.  I will not be able to do much for myself for the first few days after surgery, except go for slow walks.  Then, light-duty for 4-6 weeks.

So yeah, its a big surgery, bigger than my mastectomy and reconstruction in 2016.  But, I still feel that it’s right for me and it’s what I want to do.  I’m not suffering from a severely post-chemo compromised immune system.  I’m not suffering from radiation fatigue.  And, I will not have the risk of my irradiated skin being too weak to handle healing correctly from surgery (it won’t be there anymore, my own healthier skin will be instead).  All the research I’ve done says that its a much more physical and mentally healthy reconstruction when done by an extremely experienced micro-surgeon TEAM at a well prepared facility.  I feel sure that I have found both at Vanderbilt.  I may also have the option of Sensory Nerve Repair which may restore partial sensation in portions of my chest.  It’s a procedure they can do while they are already in the process of reconstructing blood vessel connections and such.  Both Drs. Braun and Higdon have done hundreds of them with this type of surgery.  It’s just whether I want it done, and what condition my cut nerves are in.  We will be discussing that more during my October visit.  I’m not really sure how I feel about that yet.  I’m nervous that rebuilding my nerve connections will leave nerve pain in place of numbness (Postoperative-Neuropathic Pain).  I will be asking questions about that for sure!

Follow-ups:
Results of the CT Scan – All good blood flow, no obstructions or major scarring in the vessels or tissues to be used.  One miniscule kidney stone.  (What!?! I wonder how that’s going to go?)
Dr. Braun’s observations were correct, I’m all good to go!

Links to more info about this type of surgery:
Sensory Nerve Reconstruction: Restoring Breast Sensation During DIEP Flap after a Mastectomy

What to Expect After DIEP Surgery?

DiepCJourney – Foundation/Blog

Blissfully Oblivious…

This was sooo good for me to re-read today! I hope it is helpful to anyone else going through something similar.

Dalynn's Road to Recovery

So, I have been feeling pretty good about myself. I’ve had a pretty solid positive self image of myself most of my adult life.  My parents helped with that, urging me to keep people around me that bolster me and lift me up, not tear me down.  My college life was an eye opener with plenty of attention from guys, not always the right kind but still positive attention, not the ugly stuff that Middle School life is made of.  And as I have mentioned before I really don’t have a good grasp of what I “look like”.  I’ve never been one to primp or “dress up” very often and such.  I am a confident woman about my inner qualities being more important than my outer appearance, but also pretty confident that everyone is beautiful to someone….God made all of us unique for a reason, and we are all beautiful…

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

I am still amazed at how different my life is now, and still oh so grateful for those closest to me in those really hard times. I’m still not done with my reconstruction journey, but look how far I’ve come! 🙂

Dalynn's Road to Recovery

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…

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Going home today!

Wow!!!! Two years ago yesterday I had my bilateral mastectomy, my official date of being Cancer FREE!!! And wow that seems so long ago.

Dalynn's Road to Recovery

Dr Lynch checked my incisions and under-skin fluid levels.  He gave me several instructions:

Check all 4 JP drains frequently, strip and empty as needed.

Can go home today, if I feel up to it. Yeah, I’ve already been up and around lots…fluid IVs make you pee alot 😉

Walk often throughout the day each day.

Take prescription meds: Extra strength Tylenol every 4-6 hours, Valium once a day at bedtime (to control muscle spasms in my chest), Zofram as needed for nausea, Oxycodone as needed for pain.

Move arms as much as possible le, but not above the head until my appointment Thursday.

No lifting.

Lots of rest

Can take dressings off and shower on Sunday.

Hope to remove at least one drain at follow-up appointment Thursday.

Dr Rogers will be in later also, until then I’m out on a terrace at the back of my patient wing, enjoying…

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