The Healing Process - Good News/Bad News

A guest post by an anonymous writer, which will be an ongoing series.

Please join us on her journey!

This week was filled with good news and bad news. It is bittersweet and so difficult to focus on the good news when bad comes along with it, but I am learning. I realized today, from a comment from a friend to me, that this is NOT the most difficult thing I have been through in my life, nor will it be the worst, likely. This in itself is both good and bad news! It is pretty laughable that a thing that would be the worst for many people is not the worst to me. I was also called strong. I am not strong or brave. I have just accepted that this is life. And if I am honest I have probably stopped caring and become hardened to some extent. A difficult life can do that.

Good News 

This week on Wednesday I went to my doctor appointment (3 weeks post surgery). I was given the go-ahead to quit my antibiotics because the redness I was experiencing had subsided. The other good news is I have 100% mobility, which is amazing! This is not without pain/stretching. I need to continue exercises 2-3 times a day for 4-6 mos, but I am told that the stretching feeling will subside over time if I stick to the exercises.

Bad News

My sister left on Monday, which has been a challenge, trying to suddenly go back to doing everything I always did. It was a pretty easy week, thankfully, but overwhelming to get back to a routine I did not have to do for over two weeks. 
I had one whole day of no medications and then the reaction I was having earlier (at 2 weeks) returned! Thursday my left side was all pink again, worse than the first time. I called the doctor and he said to restart refills of prednisone and both antibiotics. This was very discouraging. 

I have what is called Red Breast Syndrome (RBS), a recently identified clinical entity characterized by non-infectious erythema associated with the use of acellular dermal matrix (ADM) after post-mastectomy reconstruction. ADM (AlloDerm®) is created from donated human skin. A process removes all of the immune cells from the donated skin while retaining all of the important biochemical and structural components. This is supposed to prevent rejection of the material, which is more common with other materials used for reconstruction.

I immediately became discouraged and began to regret my decision to do the left side (the unaffected side). If I knew that this reaction would resolve, this would be another story. I do not know that so am concerned about what happens if it doesn't. I have been encouraged by my nurse sister, my doctor and a nurse practitioner friend that it usually does resolve, so I hope that this the case. Otherwise, we are back to square one with reconstruction plans. This is also probably delaying the completion of reconstruction because of waiting for this to clear up.

In the short term, this is upsetting because I was planning to feel good this week for my kids' spring break. I was hoping to do fun things and now I am going to feel sick from medications the entire time instead. Additionally, my husband will be gone Tuesday-Thursday, which means I will literally be handling things alone for those days. 

Overall, I am thankful that I am doing better than I ever expected at three weeks. I just didn't see this coming. I sent an update to my friend yesterday and she suggested Psalm 46. I have just begun to pray the Psalms so this was appropriate.

1 God is our refuge and strength, a helper who is always found in times of trouble.
2 Therefore we will not be afraid, though the earth trembles and the mountains topple into the depths of the seas,
3 though its waters roar and foam and the mountains quake with its turmoil. Selah
4 [There is] a river- its streams delight the city of God, the holy dwelling place of the Most High.
5 God is within her; she will not be toppled. God will help her when the morning dawns.
6 Nations rage, kingdoms topple; the earth melts when He lifts His voice.
7 The Lord of Hosts is with us; the God of Jacob is our stronghold. Selah
8Come, see the works of the Lord, who brings devastation on the earth.
9 He makes wars cease throughout the earth. He shatters bows and cuts spears to pieces; He burns up the chariots.
10 "Stop [your fighting]-and know that I am God, exalted among the nations, exalted on the earth."
11 The Lord of Hosts is with us; the God of Jacob is our stronghold. Selah

I am sure we all have heard "Be Still and Know that I am God". In this translation, it says "Stop your fighting and know that I am God". I read this as stop fighting against my life circumstances, or even God's will itself, and feeling discouraged. God knows what he is doing.

This blog provides more insight into Ps 46, including more on the translation of Ps 46:10.
How Do We Rest in God?

This song is a great reminder that my help comes from the Lord and expresses many of the themes of Ps 46: Helper, Rest, Rescue 

Read Other Posts in this series:
Maxed Out Minivan
To start at part one go here:
Part 1: Stage Zero What?

The Healing Process - The First Two Weeks

A guest post by an anonymous writer, which will be an ongoing series. 
Please join us on her journey!

Tomorrow will mark two weeks since my surgery and I am happy to say, healing has been going extremely well. It has not been without its challenges and bumps, but I have been blessed to have a lot of support from family and friends.

Feb 28-March 4 were my hardest days. I had a lot of pain and was extremely tired. The bandages and drains bothered me immensely.  These days I was grateful for my husband who brought me meals and let me rest, as well as 6 friends who came to visit or took my kids for some respite.

March 5-11 I went off the prescription pain meds, thankfully, and continued to make progress with pain and mobility. One of my sisters was here to help. She is also a nurse so she knew to tell me to rest and gave advice as I needed it regarding everything under the sun regarding healing! She did all of the laundry, dishes and child care and meals were provided by friends through a meal train. I was out of bed most of the day most days and rested in the afternoon and at night. I was able to spend time with my family without overdoing it and for that, I am eternally grateful!

March 6 I had two of my four drains removed and my bandages/tape removed. That was such a relief!  I was also told that I will most likely get to complete reconstruction in about a month instead of 3-4! After my appointment, I was able to take a shower, just 6 days after surgery.  Keeping the drains dry was a challenge, and quite comical (wrapped in saran wrap)! I even washed my own hair, something I did not think I would be able to do for a few more weeks.

March 10 I went to the zoo with my kids, husband, and sister. I think the fresh air and walking around did me a lot of good.

March 11 Another sister arrived and the three of us went to lunch and a movie while my husband watched the kids! Sister time was good for me too. My first sister left in the evening and my other sister stayed. She, too, is doing almost all of the "work" for my kids and my home!

I am honestly probably mobile enough (though very tired and still shouldn't be doing heavy lifting) that I could have done this week without my sister if I had to. However, her being here is helping me heal all the faster and I am still getting meals which is making it easier on all of us.

Today (March 13) I went to see my surgical oncologist, plastic/reconstructive surgeon, and the physical therapist. 

My first doctor reported that the pathology report is clear, which means a minuscule risk of recurrence of around 2-3%. Recurrence after mastectomy is not common, though it can happen given around 5-10% of breast tissue remains, especially with skin and nipple sparing mastectomy.  

For my visit with the plastic surgeon, I had the steri strips and the remaining two drains removed which was so awesome, considering they can be in for up to 4 weeks, which I was expecting. The doctors are all very impressed with my healing. 

I was given exercises to do three times a day starting in a couple of days (once drain sites are healed), and am expected to have full mobility in about 2 weeks.

Here is the challenge now: I have a possible complication which requires (as a precaution mostly) 5 days of a steroid (3x a day) and another antibiotic (2x a day) for 10 days (on top of the 3x daily one I am taking already and have been since my surgery). I was also given instruction for the scar healing under my arms. This requires 2x daily massage with Mederma and silicone bandages. 

So, I need to figure out how, on top of taking care of 3 kids, to take 3 different medications on a schedule which won't upset my stomach (with food), do 3x daily exercise and 2x daily scar care. It seems daunting, especially since I am not a schedule person! I find it difficult to even find time to eat in my "regular" life let alone all of this. And in 6 days I will no longer have help with my kids. Additionally, my son asked to nurse again tonight, since the drains are gone. He thinks I am all better and will have milk again. Heartbreaking!

I haven't been very positive today. I have been more annoyed than anything. This doesn't undo the gratefulness I feel or the many blessing I know that I have in the midst of this. It is not an either/or situation but a both/and one (BOTH annoyed AND grateful simultaneously). I'm so glad I am not doing this alone. I might be a mess. 

And even when my sisters leave, I am still not alone! I am never alone!

Read previous posts in this series:
Maxed Out Minivan
To start at part one go here:
Part 1: Stage Zero What?

Post-Surgery: Let the Healing Begin!

A guest post by an anonymous writer, which will be an ongoing series.
Please join us on her journey!

Let's get real here for a moment. Having a mastectomy with reconstruction is nothing like getting cosmetic breast augmentation! I promise you no one would go through this voluntarily except maybe for preventive care because they have a genetic predisposition to breast cancer. It is a long and difficult process. This first surgery has done a number on me! 

Yesterday was a pretty horrible day! It was very difficult physically and emotionally. I went through so many emotions - anxiety, fear, anger, calm, peace, joy, fatigue, etc. What an experience! After the surgery I was mumbling, incoherent, and my throat hurt very bad from the endotracheal tube that was in during the surgery. I had such extreme fatigue that I was falling asleep while playing tic-tac-toe with my kids!

Today I feel even worse! I feel dizzy, itchy and am seeing double on and off. My whole trunk feels like it's on fire. I have pain all the way from armpit to armpit and down each of my sides armpit to waist, even though I am on pain meds. My throat still hurts from the endotracheal tube. Additionally, I am also coughing up phlegm from it. If I hear one more person say "it's normal" I don't know what I will do! Additionally, the drains are so gross!

Surgery day:

5:30 Made tea, folded laundry. I felt sick, anxious and sad

6:00 Woke up kids, nursed my son, made breakfast, packed lunches

6:45 Left for the hospital (kids came). It took us an hour to get a there and my daughter was almost late for school 

7:45 Talked to my sister on the phone, cried in the bathroom then checked in

8:15 Went to the surgery waiting area, labs, nurses 

9:00 Sentinal Node injection 

10:00 Back to the room, finished getting ready for surgery, met the nurse, saw doctors

11:00 surgery 

3:00 Woke up in recovery. 

The waiting was the hardest part. Too much time to think! At around 10, my doctors came in to talk to me. My plastic surgeon was way too happy! And he was wearing what looked like a 70's style tracksuit! He told me "you are going to look awesome". Then I got undressed, had an IV started and did some more waiting. The first anesthesia was turned on and I remember being wheeled down the halls and into the OR.  I do not remember them having me count backward and the next thing I knew I was in recovery.  

Although much of my hospital stay was terrible, it was also filled with many blessings! 

• Many people called or texted before the surgery to see how I was.  Many people were praying.
• The anesthesia worked so well that I did not have enough time to worry and my time under felt like two minutes. I thought I was still waiting for surgery when I woke up.
• No cancer cells were found in lymph nodes or on back of nipple.
• I have had no complications thus far.
• My kids visited me in the evening and were so sweet and gentle.  We played hangman and tic tac toe and ate chocolate. My 8-year-old girl was so sad to leave and sobbed on my lap.  
• My boy did not ask to nurse. In fact, my 5 year old asked him and he said "No. No milk, there's only medicine in there".
• I was not nauseous after the surgery.
• I was protected and watched over all the while.

The healing has begun!  God is the ultimate Healer!

Read other posts in this series:

Maxed Out Minivan
To start at part one go here:
Part 1: Stage Zero What?

Pre-Surgery

A guest post by an anonymous writer, which will be an ongoing series. 
Please join us on her journey!

As I write this, I am less than 12 hours away from my surgery, which will take place at 11 a.m. on February 28.  I would be lying if I said I wasn't nervous. I am nervous, in waves. I do not have anxiety or fear about it in most moments, luckily. But those moments come that I do. I had a short time of fear of dying during surgery. The fear was not for me, but for the family, I would leave behind, especially my children. That fear dissipated for the most part for several weeks and this week it has crept back up on me again. In these moments I take a deep breath and remind myself of all that I know and am brought back to a peace that passes all understanding.

I am somewhat concerned about the long road of recovery, and emotional reactions I may have.  Last week I met with a Physical Therapist and was told some things to expect. Other things have been told me by other survivors. And yet others are from my own experience. Here are some of the things I am trying to prepare myself for (though I think nothing could really prepare me):

• Difficulty in movement - I was told that for several weeks, up to a month, I will have limited arm mobility and very weak arm strength. This will make getting up from a lying down position impossible for a while, requiring me to sit up to sleep. This is because the pectoral muscles are completely separated to insert the expanders for reconstruction underneath. Apparently, even when not pushing up from elbow or arm, these muscles are even used to sit up from the core. Other things that will be difficult (or impossible) are dressing, combing and washing hair, applying makeup, washing my face, eating and drinking (especially the first couple days) and other things I generally take for granted!
• Lift limit - I will have a lift limit of 5 lbs for 2-4 weeks, depending on how fast I heal. I will not be able to lift my kids, do laundry, grocery shop, etc during this time.
• Drain bags - Four drain bags will be in for 2-4 weeks and need to be emptied and measured daily. This seems daunting
• Emotional reaction - Many women are surprised or dismayed by the appearance of their bodies, especially in the beginning before healing has started. I am preparing myself for this reality. Additionally, I expect I will have some emotional response about the inability to breastfeed. I expect this considering I already get choked up thinking I have my last time to nurse the morning of surgery, which is way too soon!
• Reconstruction waiting - waiting for reconstruction is a long process with weekly appointments to fill the expanders. I expect living in my body for those 8-12 weeks will feel odd.

I am sure there is much more that I will discover along the way. In the meantime, I am very grateful to have family helping for almost three weeks and great, supportive friends and many people praying for me. I am also grateful that I have been walking this with a peace that I would never have thought possible in this situation. But it is! 

My greatest wish is that God uses my journey to help someone who reads this series. God uses broken things for good. I pray He uses me.

"Now I'm just a beggar in the presence of a King

I wish I could bring You so much more

But if it's true You use broken things

Then here I am Lord, I am all Yours"

Read other posts in this series:
Maxed Out Minivan

To start at part one go here:
Part 1: Stage Zero What?

Humor Helps!

A guest post by an anonymous writer, which will be an ongoing series. 
Please join us on her journey! 

Throughout this journey thus far, one thing that has helped tremendously is laughter. Whether making light of the situation, being silly with my kids, or watching a funny movie, laughter really is good medicine.

A few funny things have happened that I probably will never forget:

• Before my biopsy I told my sister "worst case scenario, I can get new boobs"! It was totally a joke at the time because I NEVER thought it would be true. However, I was trying to use laughter instead of fear to cope.
• During my biopsy, the nurse kept coming over to tell me what was going on. I was laying on my stomach in a very awkward and uncomfortable position. One of the times she came up, I told her "this is like the worst massage ever"!
• This third one was pretty humiliating but also hilarious. After my second biopsy, I went directly to get a mammogram, because they take images to make sure they got the entire area to be biopsied. I took down my robe off my shoulder, looked down, and there was a long black hair growing out of my nipple! How I never noticed that before then, I do not know.  So the entire time of the biopsy the doctor saw that!

I have been so blessed with friends and family to laugh with! And I have the ability to laugh without fear of the future because my hope is in the Lord!

Read other posts in this series:

Maxed Out Minivan

To start at part one go here:

Part 1: Stage Zero What?

Weaning

A guest post by an anonymous writer, which will be an ongoing series. 
Please join us on her journey!

First off, let me say, forced weaning is NO fun! I am THAT mom who believes that, ideally, weaning should happen when both Mom and baby are ready. Obviously, that is rarely the case based on many conversations I have had with many moms. Most babies wean before the mom is ready, or the mom is ready when the baby is not. With my first two children I was blessed and both mom and baby weaned relatively easily with a gentle weaning, "don't offer, don't refuse" approach.

The only time I have cried during this entire ordeal is the day I was recommended mastectomy for treatment. I cried, not for the loss of a breast, but for loss of breastfeeding, at a specified time and not when we were both ready for that transition. Being my last child, I assumed I would nurse my child as long as he wanted to, up to age three. Suddenly that wasn't an option for me. I reasoned that I COULD potentially just nurse on one side, and have a mastectomy on the affected side only. In the end, I realized this may be difficult for us both emotionally and practically, as my now toddler has always preferred the affected side.

I had a great plan laid out after I decided to go ahead and have a mastectomy on both sides. I had more or less dropped the morning nursing and was nursing mostly at nap time and bedtime. I thought I could just drop the bedtime nursing as long as Dad could do bedtime and would do nap time nursing only up until surgery day. This was not practical once it came down to actually doing it, as my husband travels 40% of the time.

In the last few weeks, I decided to stop struggling with it so much (refusing to nurse at night) and just enjoy these last days of nursing!  It has been bittersweet. Every time I nurse my son to sleep I realize these are our last days. It both helps me to enjoy and not rush that time, and breaks my heart, simultaneously.

For almost three weeks after surgery, another caregiver will be doing nap time and bedtime, and by the time I am doing those things again, it will have been 20 days of no nursing for him. I assume by then he will be used to not nursing and will not ask. However, I am prepared that he might and will deal with that then. I have been preparing him that soon the milk will be gone because the doctor has to take "yucky stuff" out which will also take away the milk. He understands, but is not happy about it. The other day he told me "Why does the doctor have to take it out? I don't want the doctor to take it out". Other days I ask him "what will we do when I can't nurse anymore"?  He says "just rock". So I know he understands.  And although this breaks my heart more than any other part of this, I know we will be okay.  He is my precious boy and we will find other ways to comfort and bond.

I am praying for peace and calm in this process and, so far, I have received it. God is good. He will help us through this transition. And I will always cherish these last days of nursing, more than I ever would have had this not been the way it ended. It's a blessing, really. 

Read other posts in this series:

Maxed Out Minivan
To start at part one go here:
Part 1: Stage Zero What?

The Upside(s) - Brand New Boobs!

A guest post by an anonymous writer, which will be an ongoing series. 

Please join us on her journey!

How many times do you think I have heard "at least you will have nice boobs" or some other version of that statement since I started telling people I was having a mastectomy? More than I can count! It is understandable in some ways. Even I was guilty of thinking that, in the beginning. I thought "worst case scenario, I will get new boobs" after I found out I needed a biopsy. Little did I know it would ever become a reality. Additionally, I did not realize all a mastectomy with reconstruction entails.  

“I wish I would have known my reconstruction process was a work in progress,” says Megan, recently diagnosed in late 2014. “You’re not just waking up from surgery with fabulous, perky boobs. People will say, ‘At least you are getting new boobs as a result of cancer.’ But, it’s more like a six-month science project, and it’s not fun.”

This statement is from Post-mastectomy fashion: 4 things I wish I'd known before. This article talks about being comfortable between mastectomy and reconstruction (8-12 weeks in most cases) and also how things fit when reconstruction is complete. One thing I did not expect and am not looking forward to is finding a bra that fits (or a swimsuit for that matter)!  Apparently, regular bras don't fit reconstructed breasts for many women. Reconstructed breasts don't have the "give" that natural breasts have. So, rather than trying to mold into the clothes, the clothes have to mold to you.

"Reconstructed breasts in no way resemble natural breasts. Attempting to wear a top that used to give you killer cleavage may only end in frustration.

“Though your breasts may be the same size as they were before, they are not the same.” says Jeannine, who was diagnosed at 26 and underwent a bilateral mastectomy with latissimus flap reconstruction. “The density, shape and consistency of implants are vastly different than that of normal breast tissue, and radiation can completely alter your skin and muscle. This must be taken into consideration when choosing clothing. Your implants don’t squish into things, and they don't move for you. I had to get stuck in a few items of clothes in dressing rooms to learn that lesson.” "

Despite these difficulties, which I did NOT expect, there are some upsides to having a mastectomy (some of these are totally silly, so please forgive me):

• I will get to have "young" looking breasts (though not mine and difficult to manage, they will probably look great).
• I get to buy a new swimsuit.
• I will have time to catch up on my DVR'd shows and read while I recover.
• I will get some delicious meals brought to me and cooked by others.
• I get to have TWO sisters visit in 2 weeks time!
• My kids get time with their aunties and more time with Dad than usual.
• I get a break from doing bedtime and grocery shopping for a bit (ha!).
• I get to meet some fabulous people I would not otherwise have met.
• Most of all, I am growing closer to God and seeking Jesus, my Savior in everything.

Through this journey thus far, I have experienced more moments of peace and pure joy than I have during any other time of my life!  That, my friend, can only be the work of God!

You have turned for me my mourning into dancing;

you have loosed my sackcloth

and clothed me with gladness,

that my glory may sing your praise and not be silent.

O Lord my God, I will give thanks to you forever!

Ps 30:11-12 ESV

Read other posts in this series:

Maxed Out Minivan
To start at part one go here:
Part 1: Stage Zero What?