February 13th and 14th - meeting the medical team

Because of all of the positive things we've heard from past Roger Maris Cancer Center patients, we decided to pursue treatment there.  February 13th I met with a radiation oncologist, medical oncologist and the surgeon.  The 14th we met with a plastic surgeon.  The surgeon believed I wouldn't need plastic surgery, but wanted a plastic surgeon available just in case they had to be more aggressive with surgery than planned.  All four of these medical professionals tried to find the cancerous tumor which was in my breast and not one of them, even after know the precise location, could feel the tumor.  This tumor was stealthy and was positioned to be in my body for a lot longer before it could have be externally detected.

Because my case was incredibly unique and well outside what they normally deal with, the medical team presented all of my information to the RMCC tumor board which is a collection of medical professionals which give advisement on challenging cases.  It was advised that I have a PET scan done.  So that would be our next step.

Results - Friday, January 27th

 Shortly after 5:00 pm on Friday January 27th, I got the phone call telling me that I do indeed have an invasive breast cancer again.  One of the hardest part of this diagnosis was calling my parents and telling them that I too have cancer, because my dad's diagnosis was so fresh and painful.  I could hear the emotion in their voices and my dad told me to not worry about him and do everything I can to stick around for my family.  

Biopsy

 The morning of the 25th, I headed to the breast center for my biopsy.  This appointment was actually interesting to me.  The way the equipment was positioned relative to me, the tech, and the radiologist, I could view the ultrasound screen and watch the needle snap out for every sample taken from the mass.  The mass appeared on the ultrasound screen like a tiny ill-defined ghost shaped blip just casually hanging out next to my breast implant.  Every time the radiologist took a sample, the edges of the mass seemed to disappear.  Because the mass was not very defined and was fairly vague on the screen, the radiologist took over 10 sample to be sure he got a good sample from the mass.  By the end of the biopsy, the mass was even harder to identify on the screen.  I was given an ice pack and a compression top and sent home.

When I arrived home, I sat down to finish up some grading I needed to get done for my kids' homeschool courses.  I hadn't been sitting there long when my phone rang.  It was my mom.

I hadn't told my parents about the mass the MRI had identified and I had just got biopsied because my dad had been doctoring for health issues and I didn't want to worry my parents needlessly.  When I saw it was my mom calling, I was hoping she was calling with good news about the testing my dad had done the previous week.  When I heard my mom's voice, I knew good news was not what she had.  My dad had aggressive late-stage incurable lung cancer.  Now was not the time to let them know I'd had a biopsy that morning.  Heart-broken and exhausted, I couldn't dwell on my pending biopsy results.

Ultrasound

 January 23rd was the date of my breast ultrasound.  The most awkward part of this appointment really boiled down to the fact that I am pretty ticklish.  To get a good view of the mass, which was tucked up alongside the implant, the tech had to drag the ultrasound wand all over my armpit area.  I spent most of the time mentally trying to convince myself not to flinch.  After the tech finished up she went to get the radiologist, who immediately read the results.  He recommended a biopsy.  Based off of my history and the ultrasound results, he said he thought there was slightly more that a 20% chance the mass was cancerous.  Considering that before my first breast biopsy the radiologist said there was greater than a 95% chance I had cancer, 20% odds didn't worry me a lot.  I decided to try and continue living my life as optimistically as possible, until I had a definite reason not to.  The biopsy was scheduled quickly... for the 25th.  

Routine Follow Up Test

The turn of the year came and went with not much fan fare.  Sometimes early January hits me heavily and other times I realize it's passed in hindsight.  This year was an odd mixture of both.  January 4th is the anniversary date on which I was first diagnosed with breast cancer.  That date came and went in 2023 without me even realizing its significance.  It was a few days past that I realized it had been over seven years since cancer had been much more than a mere memory in life's rearview mirror.  The significance hit me oddly this year and I had a very short-lived moment of overbearing fear which caused me to suck in my breath and voice inside my head, "I wonder when cancer will be back?".  

I've come to realize that processing life is not about dismissing fear, but processing it through the lens of naming it for what it is, allowing yourself to feel it, identifying the different nuances around the feelings and allowing it to slip away until it needs to be processed some more.  So I allowed myself to feel those feelings, identified that they came from very real experiences which I have lived and slowly those feelings of fear slipped into the background.

In 2011, shortly after I had finished surgery, chemotherapy and the first steps of reconstruction, breast implants were surgically placed.  I was told that in around ten years I should have a breast MRI done to make sure the implants are still in good condition because sometimes an implant can develop a leak which is hard to identify in other ways.  

Back in December of last year, I decided to go ahead and schedule that MRI.  We had moved a year earlier and I had just established a new primary healthcare provider locally.  January 12th was the day the MRI was done.  It was a pretty straight forward test... slightly uncomfortable because you have to lie on your stomach with your arms above your head for a period of time, but really not a big deal.  

Being the realist that I am (my husband would say pessimist), I often process a range of scenarios, including worst case, so I can be prepared.  In this situation, I'd processed worst case scenario as my implants needing to be replaced.  This would mean a surgery to replace them.  Not fun, but certainly doable.  Situations don't usually catch me so off-guard, but when I received the results of the MRI a little over a week later, and saw the words "small enhancing mass" with a follow-up ultrasound recommended I realized that I had truly underestimated the worst case scenario.

 

Gifted With Grace

As we approach Christmas, it is too easy to get wrapped up in the busyness of this time of the year.  Shopping, programs, travel, parties... the list goes on and on and easily can consume some of the joy and reflection which should be the main part of the Christmas season.

And sometimes we are put in a position where the realization of the grace that is gifted to us can do nothing but lovingly embrace us and bring us to our knees.  Through circumstances not really related to breast cancer directly, but definitely related to the journey of life that brings us from fear to faith, I have been humbled beyond measure and made aware of the immeasurable blessing that is the grace that is gifted to us.

The beginning of the situation I am now in began long ago, way before breast cancer, but was orchestrated in such a way that it saved my life now.  The measurable beginning was a little over a year and a half ago.  Excruciating pain began invading my life randomly here and there, sending me to the emergency room a couple of times and to the regular doctor many times.  Elevated white counts and abdominal pain usually led to scans and ultrasounds, the concern being that I had appendicitis.  However, testing repeatedly excluded appendicitis and pointed to gynecological issues.  Ovarian cysts were randomly forming and rupturing causing appendicitis like symptoms and we also discovered I had a very large uterine fibroid.  I was assured everything appeared benign, and though painful, would not harm me.

I dealt with this pain off and on until this past August.  I awoke in the middle of the night to feed our foster baby and was in such excruciating pain that I could not stand without nearly passing out.  As I lay in bed writhing in pain, I asked my husband to fetch me a strong narcotic left over from my last surgery.  Instead he wanted to run me straight to the ER.  I talked him into seeing if I'd feel better after the four hours it takes for the pain med to begin to wear off.  Four hours later I was once again in excruciating pain and I let my husband drive me to the ER while I was nearly passing out in the seat next to him.  After a day of blood work and an emergency scan, I was told there was really nothing new on my scans that would explain my pain, and that it was probably my existing uterine fibroid causing the pain.

This did not sit well with me, so I pursued a referral to a gynecologist.  More testing showed a marginally elevated CA125 blood count which can be an indication of gynecological cancer, but more than likely was elevated from my large fibroid.  I was referred to a surgical gynecologist and the first time I met him he said I not only needed an endometrial biopsy but he also recommended a full hysterectomy.  He believed that not only should I not be living in this much pain, but he felt considering my history with having had breast cancer twice, the elevated risk of gynecological cancers was a risk that was just not worth taking.  This was hard advice to hear coming from a doctor I'd never met before.

I went ahead with the biopsy, which came back normal.  After much thinking, I knew this doctor was right.  Having a hysterectomy would be uncomfortable and could lead to some difficult side effects, but it would not kill me.  However, not having a hysterectomy could potentially allow cancers to grow which could indeed kill me.  I decided I needed to go ahead with surgery.  I had that surgery Friday, December 4th.

The plan was to have a laparoscopic procedure that would take about two and a half hours.  The surgeon started out laparoscopically and quickly realized that it would not be possible to complete surgery laparoscopically.  Before surgery, it was believed my uterus was enlarged to a 12 week pregnancy size.  While doing surgery, the surgeon realized that the uterus was actually enlarged to a 20 week pregnancy size and on top of that I had severe endometriosis which had fused most of my organs and nerves in my pelvis together.  The two and half hour surgery turned into a 5 hour surgery and the laparoscopic surgery was switched out to open abdominal surgery.

The surgeon believes I have been dealing with endometriosis since my teenage years and it had just now hit such a critical point that it, and not my fibroids or ovarian cysts had been causing my excruciating pain.  It had taken over 20 years for the endometriosis to hit a critical point.  I did not realize the significance of this timing until a couple of days ago.

I went in for my surgical follow up appointment, and my doctor, knowing how much I'd wrestled with the decision to proceed with surgery, told me that I would be very happy I'd had surgery once I'd heard the pathology report from surgery.  It turns out that the fibroid which multiple medical professionals had assured me was benign had some concerning things going on with it.  While not cancerous, the pathologist found some abnormal cells, and my surgeon believes that the fibroid was on its way to becoming a uterine sarcoma.  He told me a uterine sarcoma is a cancer which is not cured.  It is a death sentence.

Humbled, blessed beyond measure, this gift of grace has moved me to the place I needed to be right now...  reflective of the ultimate gift of God's grace.  God's grace spared me, my mortal and very flawed body, allowing me to have more time on earth with my family.  This gift seems enormous, almost beyond measure.  But how much more should we be amazed, humbled and blessed by the ultimate gift of grace?  The grace of God presenting himself as a sacrifice so our relationship with Him can be eternally and perfectly restored.  We messed the relationship up, but He has given it all to restore the thing that He knows will truly bless us beyond anything we can imagine through all of eternity.

May this season remind us all of the ultimate gift of grace!  A babe in the manger... God himself... on a mission to restore our relationship, forgive us unconditionally and love us beyond measure.

Moving On... A Day At A Time

After surgery and before heading down to Mayo for our last trip, I was really struggling with being OK with the high possibility that no further treatment would be needed.  Logically, I knew this would more than likely be the recommendation I would get from the Mayo oncologist and I knew this was probably the right choice to make.  However, emotionally I was really struggling.  Five years ago, I was treated with surgery, 15 months of intravenous treatment (chemo) and five to ten years on a pill.  Now, after getting cancer again less than four years from stopping intravenous treatments, they want to cut the cancer out and then send me on my way?  I was really struggling with how I was going to emotionally process that.  My prayer request going down to visit with Mayo this past trip was that I would be OK with what they recommended.

Our oncologist down at Mayo was very sympathetic to any fears and concerns I brought into the room with me.  He was honest and sounded like he had never encountered a recurrence case exactly like mine.  He informed us that he would be presenting my case in front of a national board of oncologists this next week to see if any other oncologists from other parts of the country had insight to share on my particular case.  That being said, he believes that due to the fact all the cancer they removed was not invasive and they had excellent surgical margins, treatment is indeed done.  He assured me that patients who are treated with surgery for Paget's disease have a very good prognosis.  He puts my ten year survival odds at 93-97%.  His honesty and knowledge helped to give me the peace I knew I needed to say I am done with treatment.

I'm not saying my peace comes from the reassuring words of a doctor, but I believe God gave me a doctor who would meet me where I was and could get me where I needed to be to continue walking forward in faith and not fear.  I wish I could say my faith meter is 100% full, but it is not.  Fear is still there and I think that is OK as long as I allow that "fear" to give me a healthy life view.

When I developed bilateral breast cancer at the age of 33, the odds of that having happened to me were less than one-half of a percent.

When I developed Paget's disease as a recurrence, the odds of that having happened were less than 1%.

Now, I have a 3-7% chance of not being around in 10 years.

How do I process that?  With a lot of faith and a healthy dose of reality...

What does that reality look like?  Currently I am relieved, because had my recurrence been invasive I would have had about a 50% chance of ten year survival.  Along with relief though, I am feeling blessed.  Blessed I have today, right now, to live life here on earth with  my family.  I have faith that I will be fully healed someday.  At that time, my scars will be gone and I will never have to worry about cancer again.  I will be made new and perfect.  I do not know when that will happen, but I know it will.  Until that happens, may I always remember to love God and love people today... now, because tomorrow is not a promise, it is an assumption of my selfish humanity.  That is the life view that I need to keep so I can continue living life to its fullest, every. single.  day.      

Post Surgery Update

I ended up having my surgery last Friday, April 10th.  My surgeon called me yesterday with the final pathology report from surgery.  Remember when I said the type of breast cancer I had was called Paget's disease and that it usually shows up with an underlying breast cancer?  But remember how I was comforted by the fact that I'd just had a clear breast MRI and most of my breast tissue was already removed, so the odds of me having an underlying breast cancer was unlikely?  Well, once again the unlikely happened to me.  My surgeon informed me that not only did I have Paget's disease, but I also had an underlying area which measured just under a centimeter of ductal carcinoma in situ (DCIS) underneath the skin that had Paget's disease.  Both Paget's disease and DCIS are non-invasive cancers, which means they are contained in the area they formed.  This surprise diagnosis leads me to the explanation of how I'm doing.

Today, I am feeling tired, sore, sad and extremely blessed.  I don't know if that makes sense to anyone but me, but I will try and explain.  I am tired because anesthesia is really hard on my body.  It drains me of energy.  I haven't been taking prescription pain medication since Friday, but yet I feel a lot of the time like I'm in a mental fog.

As far as sore, that is probably the easiest thing to deal with.  I have been maintaining my pain relief with just Tylenol, and my last dose of that was Sunday night.  I feel just as good now having not taken Tylenol as I did while on Tylenol.

Sad is a little harder to deal with.  I choose to mutilate my perfectly good reconstruction to get rid of this cancer.  I choose to mutilate not one side, but both sides of my reconstruction because I knew if the extra tissue on one side had betrayed me, I'd never trust the other side.  So I'm sad because while before I could sometimes look at myself and sort of forget the horror that was breast cancer, that is not an option right now.  I am constantly reminded of the pain and fear that breast cancer has become for me.  I realize time will fade the scars, sadness and fear, but it will not take them away.  As long as the reminder of that sadness and fear leads me to remembering how blessed I have been through this ordeal, it will be alright.   Through it all, God has been, is and will continue to be big enough for my sadness and fears.

Lastly and mostly, I feel extremely blessed.  I had four years with excellent reconstruction that allowed me the freedom to forget sometimes that my body had been through horrific disfiguring surgery because of cancer.  I am blessed because had not the Paget's disease presented itself so suddenly out of nowhere, how much longer would have I had before the underlying DCIS turned invasive?  That Paget's skin presentation was the warning needed to address a cancer which was brewing underneath.  Once again, I feel protected from a situation that could have progressed into a much less optimistic prognosis.  So I am counting my blessings, and I'm still feeling incredibly blessed.

So what is the next step?  Well, hopefully treatment is done.  We go down to Mayo again the end of April to consult with a medical oncologist hopefully to confirm my surgeon's belief that since the cancer was non-invasive surgery was the only treatment needed.  After that, I will consult with my local medical oncologist and make sure both oncology professionals agree.  We will proceed from there.

Mayo's Take On Things

Our Mayo trip was not very eventful, which is a good thing.  I have always been incredibly impressed with how efficiently the medical process runs at the Mayo facility.  Our first appointment was at 7:00 a.m. and by 2:00 we had completed two consults, labs with the results,  we were set up for our next two appointments in April and surgery was penciled in.  We also had time to enjoy a delicious sit down brunch in that time frame as well.

One of the new things I learned while down at Mayo was the cancer I am dealing with is hormone negative and Her2 positive.  This makes sense, because I am currently taking Tamoxifen which should prevent any hormone positive cancers from growing.  I stopped my Her2 targeted treatment in April of 2011 because standard protocol for treatment for that drug was one year.

No official decisions have been made on post surgery treatment.  We will wait until final pathology is completed after surgery and then I will be referred to a medical oncologist to see what, if any, post surgery treatment is needed.  They did make me aware that chemotherapy is still on the table as a possible treatment option.  However, one of the toughest drugs I completed last time, Adriamycin, will not be an option since I received my maximum life time dose last time.  I was relieved to hear that.  They were also reassuring in the fact that while one of the toughest drugs to tolerate (Adriamycin) is out of the question for me this time, there are a lot of other options out there to effectively treat breast cancer in my situation.

Mayo did not even mention the possibility of radiation to me.  I would be OK with keeping radiation as one of the breast cancer treatments I have not experienced.  However, I am still keeping it in the back of my mind as a possibility, just because I know from experience that surgery can lead to unexpected findings.

The pathologist at Mayo retested my biopsy sample and confirmed that we are indeed dealing with a Paget's disease breast cancer.  I was led to believe by the professionals I saw at Mayo that, while any cancer recurrence is definitely concerning, Paget's disease is one of the most treatable breast cancer recurrences to deal with.

Tentatively, surgery is penciled in for sometime during the week after Easter.  We will know more by next week.  I feel so much better just having a rough idea as to when surgery will take place.

 

Details

Now that we've had some time to process what is going on, I'd like to give an update which is more specific as to what we are dealing with and how we are going to proceed.

I was diagnosed with a very rare breast cancer called Paget's disease.  Basically, when I had my mastectomies down at Mayo they figured I was a good candidate for mastectomies which leave more of the breast tissue intact.  This made reconstructive surgery more appealing to me, and more than likely the emotional healing a little easier as well.  However, I was warned this procedure would increase my chance of a local recurrence, be it ever so slight.  I took the risk, and that is probably why we are where we are today.

After researching Paget's disease, I learned that it makes up less than 5% of all breast cancer cases and has around a 1% chance of occurring after the type of surgery I had.  Most of the time Paget's presents with an underlying breast cancer which could be invasive, but considering most of my breast tissue has been removed and the fact that I had a clear breast MRI the end of February, that shouldn't be the case for me.  My biopsy only showed non-invasive cancer, but the surgeon did say there is a small chance invasive cancer could be found in the additional tissue removed during surgery.

We were very pleased with our surgeon who did the biopsy in Fargo.  He possessed excellent bedside manner, was very knowledgeable and he took the time to request my surgery notes from Mayo.  Treatment in Fargo was appealing until I started researching and discovered exactly how rare Paget's disease is, and how the prognosis is decreased in younger women and women with Her2+ cancer.  I have one shot at this, and I'm making it the best shot I have.  I have decided to go back down to Mayo Clinic for treatment in hopes they will have had more experience with the scenario I'm dealing with and be able to advise the most forward treatment available.

So once again, we will be traveling to Mayo Clinic to see what they advise for a treatment plan.  We leave Monday and I don't know when we will be back.

I have no regrets about the choices I made for treatment and reconstruction five years ago.  That is the path I needed to take to process what had happened to me and now I'm moving on.  Is the experience I'm having now hard?  Yes.  However, emotionally I believe I'm in a better place today than I was five years ago.  Still feeling blessed....  

Just Be Held

We got our biopsy news yesterday.  It was not what we had hoped.  I do have cancer again.  It is more than likely a recurrence of the cancer I had before.  This scenario is extremely rare, but does happen.  My surgeon did assure me this is a very treatable recurrence.  Treatment should just be surgery and if there are any surprises during surgery, radiation may be a treatment option as well.

A friend shared the song I linked here with me.  It has been a blessing to me over the past couple of days.  I hope it blesses you as well.

Could you please pray for us today?  The night was long, as sleep eluded us, and we are tackling a full day of school and tending a little one with a bad case of the stomach flu.

Cloudy With A 100% Chance Of Praise

When the storm clouds accumulate suddenly... when you don't have a clear view of the horizon... when the thunder rumbles the depths of your soul... when the warning sirens begin to voice their concern, one should take shelter.  Taking shelter is not simply finding any structure and trusting in it.  Taking shelter requires analysis.  One must seek a place free from flying debris, windows and unsafe structure.  Your life depends on making the best choice possible.

Psalm 121:1-2

"I lift up my eyes to the hills-- where does my help come from?  My help comes from the LORD, the Maker of heaven and earth."

My help and my shelter come from the Maker of heaven and earth.  How amazing is it that the Maker of the wonderment which surrounds us loves us so intimately that He is there to weather every storm which comes our way with each and every one of us?  Please take the time to read the rest of Psalm 121.  It is such a comforting Psalm.

My storm is forming on the horizon.  I don't have a clear view.  The sirens are begin to sound.  I am seeking my shelter in the Maker.  Maybe this storm will pass on either side of me, and the clouds will quickly dissipate and the rainbow will appear.  I would love to praise the Maker in the beams of sunshine.  Or maybe this will be a very cloudy and dreary season, during which the Maker will carry me and surround me with His provision and peace and I will praise Him in the storm.  Either way, my help comes from the Lord!

My apologies to those friends and family whom are so near and dear to us.  I wish I had the emotional strength to visit with each and every one of you and talk this through, but the reality is I do not... not today.  When I see you or talk to you, please don't be afraid to bring this up.  I'm letting you all know at the same time, in this way, because I don't know how to initiate the following conversation.

You:  "Hey!  How's it going?"

Me:  "Good!  Oh, wait.  I just lied.  Please forgive me.  You know that cancer I had five years ago?  Well, the doctors think there is a small chance it may be rearing its ugly head again.  I have an area of skin which has thickened, has bleed and has an odd appearance.  My oncologist advised we figure out what is going on.  Yesterday, I had an initial consult with a surgeon who says the skin issue could be a dermatitis, or it could be a cancer recurrence.  Both scenarios present exactly the same way.  The surgeon did an immediate biopsy.  I should know by Friday if it is cancer or not."

Yesterday was the fifth biopsy I've ever had.  Three out of my four previous biopsies have come back as cancer.  I've decided biopsies give me anxiety.  Please pray for peace for Jay, our kids and myself. I will let you know the results when we get them.  Thank you!

"We Tell The Truth. We Do Not Flinch"

My husband and I have begun watching episodes of "Bones" on Netflix in the evening, before we go to bed.  This is great for curbing late night snacking, as after watching most of these episodes, my appetite has totally been destroyed.  If you've seen this show, you know exactly what I mean.  The episode we watched last night ("The Girl in the Fridge"), was not as intriguing as most we have watched, but nonetheless the topic of not being sold out and diligently portraying the truth stuck out vividly.  Temperance, one of the main characters, was testifying in a murder trial.  She used some powerful lines when speaking with one of her colleagues about a very dangerous situation they had been in and how that situation should be dealt with.  The lines were, "We tell the truth.  We do not flinch.".

It's hard to be real and truthful when life brings you to places that previously only existed in your worst night mirrors.  We have been taught, be it through people squirming when we occasionally burst out in honesty, or by watching role models put on a good face when we know things aren't good, to cover up the truth if it may make someone uncomfortable.  Telling the truth may sound easier, but when push comes to shove, we tend to "flinch".  I've discovered some heroes in my breast cancer journey who tell the truth, and certainly do not flinch.

These heroes are the models portrayed in The SCAR Project:  Breast Cancer Is Not A Pink Ribbon, produced by photographer David Jay.  When I say models, I'm sure your mind goes straight to scantily clad barbie-like women, starring seductively at the camera.  While these models are scantily clad and starring at the camera, the reasons they are presented this way is to inform.  Their bodies, though scantily clad, are heavily covered in the scars that are left behind after breast cancer treatment.  Their stares tell a story of pain, fear and determination.  These are young women who have been treated for breast cancer and are brave enough to tell their story with absolutely no words.  And what a story they tell.  I must warn you though.  These stories are not for everyone.  Certainly not children, and certainly not people who want to keep believing that breast cancer is pretty, pink, and oh so curable.

My "favorite" picture in the project is one of a young woman with very short hair, tears streaming down her face, mastectomy scars splayed across her irradiated reconstructed chest.  You can see the world of breast cancer in her eyes and spread across her body.  But, for me, what stands out above all the pain and turmoil is the essence of true beauty.  This isn't the beauty of her hair, eyes or reconstructed chest, but a beauty which radiates from within... the beauty of survival.  She IS beautiful and cancer didn't take that away.  I think she should be the "new" pink ribbon, as she is all aspects of breast cancer rolled into one honest "beautiful" picture.

Breast cancer is not a ribbon, all pretty and pink.  Breast cancer is surgery, chemotherapy, radiation, medication, pain and fear.  Survival is letting that beauty, that inner strength and determination shine through, despite wearing reminders of the horrible disease on your body and the mental reality that one day this horrible disease may rear its ugly head again. 

"We tell the truth.  We do not flinch."

Cancer Sucks

My oldest daughter brought a bracelet home from school the other day that said "Cancer Sucks". Her friend who lost her dad this past summer to cancer gave it to her. She asked me what I thought of the bracelet, since she knows I'm not found of the word "suck". "Suck" is just so negative and non descript, I usually feel there is a better word to describe a situation. I thought about it and said I really didn't think cancer deserved a better word and frankly it does just suck.

Last time I posted, I was getting ready to finish up my last reconstructive surgery. That went very well. Compared to all my other surgeries it was a breeze. The most painful part was having my port taken out, probably because I still have nerves there to feel pain. Since I'd had two other surgeries on my breasts, I'm pretty sure most of my nerves have been severed and no longer work since I had near zero pain in that area after surgery. I still had to be careful about lifting for a few weeks, but by October I was feeling well enough to help roof our house.

I'm happy with my reconstruction results, but by no means are they perfect. Due to the fact I had a more aggressive mastectomy on one side then the other, I am not symmetrical. I can go back and have revision surgeries done, if I would like, but right now that doesn't even remotely interest me. The reality is I had cancer, and had to undergo radical surgery to get rid of that cancer. I am impressed the plastic surgeon could repair me as well as he did, so I am content. I didn't expect perfection, just improvement from post mastectomy surgery, and that has been accomplished.

A few days ago, I had my very first bone scan. I've been having hip pain since October that had progressively gotten worse and my local doctor and oncologist wanted to make sure cancer had not spread to my bones. Thankfully, my scan came back as normal. I'm glad they got my results back relatively quickly, because I don't do well with "scaniety" I've decided. In the four days from the time I'd had my scan, to the time I got the results, I'd went from convincing myself the cancer had to be in my bones all the way back to there was nothing to worry about and back again about ten times.

I think the pain I've been having is just a side effect from the chemotherapy I've had and the medication I am currently taking (Tamoxifen). It's not horrible pain... just noticeable nearly all the time. Before I called my oncologist and told him about my hip pain, I'd figured that was what the pain was from, but I wanted a doctor to make the decision I shouldn't worry, not me. I didn't want to do the same thing I'd done two years ago by explaining away and minimizing a symptom only to find out many months down the road that I should have been to a doctor much sooner. So this time I decided to let the doctor do his job and I'd do my job by going to visit the doctor. The doctor took me seriously, and I'm so thankful he did, as now I have peace of mind and don't have to keep wondering.

I'm going to have to get used to being willing to let doctors know when I have pain that won't go away. I'm not a complainer, and can usually learn to cope and adapt to discomfort. But unfortunately, the reality of breast cancer is a person is not considered "cured" until they die, have an autopsy and no breast cancer is found in their body. The nature of breast cancer is such that it can crop up 10 or 20 years after an initial diagnosis, so I have to be very in tune to my body and any changes that may indicate a problem. Breast cancer isn't like a lot of the other cancers where a person is considered "cured" after 5 years of remission... it's just to sneaky.

Summer Update

Since my last update, there has been little news, however there are a couple things I would like to note.

Firstly, shortly after completing my herceptin treatments in April, my oncologist sent me for another MUGA scan to check my heart function after herceptin was completed. Now just for reference, I'd like to mention my first MUGA (prechemo) came back at 60%, which is perfectly normal. My second MUGA came back at 54%, I believe, so we could see the rounds of chemotherapy had taken a small toll on my heart function. Ever since that point, my MUGA results have only increased, and my final MUGA reading came back in May at 76%!!! I have no idea what the explanation is for the increase of my heart function while taking a drug which is notorious for damaging the heart, but I'm sure God has an explanation. Our prayer through my treatment was that I could complete herceptin, as we felt completing this drug was key to the most positive outcome possible. I feel God heard our prayers and the prayers of many others and not only protected my heart, but somehow allowed it to strengthen!

Secondly, all the surgeons and nurses are finally going to be able to put me back together again! Come mid-August, we once again travel down to Mayo to complete the reconstructive surgery process, almost exactly a year from the start of reconstruction. This surgery should be a much simpler and less painful surgery then my last and should be done as outpatient. I have also been given the OK from my oncologist to remove my chemotherapy port, so I will have that done at the same time as my reconstructive surgery.

I will never regret choosing a double mastectomy. Nobody knew until after surgery how widespread the cancer was in my breasts. My old breasts were housing a disease which tried to kill me, so honestly, I'm thankful they are gone. Emotionally, yes, I wish I could be 100% me, and have never got cancer and had to change my body. But after living completely flat chested for over 6 months after my mastectomies, I know that not having reconstruction was not an option for me either. The mastectomy bras and prostheses were uncomfortable and not very pretty. Going flat chested made shirts fit horribly, so for me, reconstruction was the best solution. So, yes, my breasts are now fake, but frankly, that is an upgrade from the breasts which housed the disease that was trying to kill me!

Can I get a drum roll please?

Da-Da-Da-Da-Da DONE! Tomorrow, my absolute very last chemotherapy treatment is scheduled! I am so excited to check that off the "TO DO" list! I've decided oncologists have this drug treatment schedule set up the way it is for a reason... they hit you with their uppercut that knocks you on your back first, so they can say "It will get better.". Then they order the drugs in such a way that you are actually thankful to get the gut punch after the uppercut, and then the slap in the face feels mighty fine after the gut punch. If they slapped you in the face first, and then said "Just wait 'til next time, it only gets worse", it would be very hard as a patient to comply with treatment. So the last few months, I've been getting slapped, but it sure beats the uppercuts we started out with! So tomorrow is my last slap! Ha Ha!

As hard as chemo was to do, in all seriousness, I could not be more thankful for all the drugs they have to treat breast cancer now! I had the discussion with my Oncologist a couple of days ago as to how much better the prognosis is for my type of cancer then it was 10 years ago, thanks to the advancements that have been made in the drugs to treat the cancer. At that time, my type of cancer had a very high rate of recurrence, where as today, my Oncologist says they hardly ever see recurrences after the drug regime I've been on. Just imagine how much better things will be in another 10 years? Amazing!

As of this week, I now only have to visit my Oncologist once every three months, until I hit five years out, and then I will switch to once every six months, until ten years out... and then I can say goodbye to Oncology forever! Again, thankful for what they did, but won't be sad to check that off the list when the time comes.

So right now my doctoring schedule is getting my port flushed every six weeks until I have it removed (probably another six months or so), Oncology visit every three months and I have my last reconstructive surgery to schedule down at Mayo clinic some time this summer.

I've been thinking the last few days more about all the people/situations I have to be thankful for in my life. You know the song "Count Your Blessings"?

"Count your blessings, name them one by one. Count your blessings, see what God hath done!"

Seriously... I need to go back to school, 'cause I can't count that high! I am so very thankful for so much!

Update Time

Well, I figured it was probably about time for an update, so here it is...

Medically, things are clipping right along. I'm still doing herceptin once every three weeks. I've had an array of side effect (headaches, rashes, full body aches, chills, sore throat, and tiredness) but nothing that slows me down too much. I do occasionally get frustrated and wonder when/if I will ever feel "good" again, but I know that this too will pass. I will be done with my infusions (herceptin) in early April. I just had another MUGA heart scan this month, and everything came back excellent! It was actually the best reading I've had yet, so herceptin doesn't appear to be messing with my heart.

As far as reconstruction, I am down to only needing one more expansion (next week!) and then I call my plastic surgeon down at Mayo for instructions as to what happens next. My understanding is that there will be a few months waiting period (to allow tissue to fully expand and stabilize) and then I will have the implant surgery.

I visit with a nurse practitioner from oncology once a month. She checks my blood work, my incisions, chest wall, axilla, heart and lungs. So far, everything has been excellent!

Spiritually, I have come to the conclusion that the simpler I can make my faith and let God take care of the big stuff, the more freedom I feel. After ending chemotherapy (the bad nasty stuff), I went through a rough time where I dreaded cancer returning. My odds of getting cancer two years ago was ~ .2%, but I managed to get cancer. Now, as a survivor, my odds of having a recurrence are anywhere in the range of 7-20%. Not very comforting, at all. I was trying to have faith in these odds, in the medical field, in my doctors, but I still felt defeated and incredibly discouraged and felt like I was just waiting for my world to be rocked apart again. Then God showed me I was putting my faith in the wrong place. He assured me that no matter what happens in the future, He is big enough, He loves me, and He is good all the time. And no matter what happens, if I keep my faith in Him, my world will not be rocked apart. I could be diagnosed with a recurrence tomorrow and He is still big enough, He still loves me, and He is still good ALL the time.

Emotionally, I've been trying to process why our society (myself included) is so adverse to feeling any discomfort. We try so hard to avoid tough situations or mask our pain. Isn't it through feeling discomfort that we learn some of the best lessons? Isn't tough situations where most of our growth and maturation occurs? It has been a rough year emotionally, physically and spiritually, but I'm trying to learn to embrace the good times with the bad, and realize that both are a part of life and make up our stories. Life is really worth living and feeling... all of it!

Breast Cancer Does Effect Women of ALL Ages

Us younger women are lulled into what I would say is a false sense of security when it comes to breast cancer. (Mistake #1) If we don't even have to consider getting a mammogram until we are 40 years old, the odds of getting breast cancer must be extremely small when you are younger then 40. And yes, that is true, the odd are very small, but you still have the possibility. And if you are like me, your odds of getting breast cancer are 100%, and really those are the odds that truly matter... your own personal odds.

One of our main tools for detecting the early stages of breast cancer as young women is the monthly self breast exams, but in all seriousness, how many of us actually do it monthly? I never did. (Mistake #2) I was the check in the shower if I had a spare minute every once in a great while kind of girl. Thankfully, I believe I did find my lump right away because I happened to find a spare minute in the shower when my youngest baby was about 4 months old. But then I made another mistake. (Mistake #3) Instead of running straight to the doctor, I decided that there was no way I could have breast cancer because I was too young, the Internet said my symptoms were not like breast cancer, and frankly, I was way too busy to deal with cancer. I should have just drawn a large, bright red "D" (in the most fashionable shade of lipstick, of course) on my forehead to stand for "Dumb" or "Denial" or both. But beating oneself up does no good, so I will stop.

What I'm not going to stop is trying to get the word out to other young women that A) younger women can and do get breast cancer. And when a younger woman gets breast cancer the odds are that cancer is more aggressive and nasty and is going to try harder to kill us then our counterparts breast cancer. As far as I know, doctors don't really know for sure why this is but younger women's breast cancer is nastier. Which leads me to B) DO YOUR MONTHLY SELF BREAST EXAM. And do it religiously. If you don't know how to do a breast exam, ask your doctor. They should show you how and/or give you literature to explain it to you. This is your most powerful tool in detecting cancer early, so use it ladies! And C) if you find a lump, don't run to the computer and research it on WebMD or Mayo Clinic's website, or any other site. My symptoms all pointed to the facts (obtained via online research) that I didn't have breast cancer, but I did! Instead, spend your time much more wisely, and make an appointment with your doctor who has the knowledge to help you figure out if you should or shouldn't worry about your breast lump. Learn from all my mistakes!

I also want to impress on you younger ladies that there are some doctors out there that may blow you off because you are so young. From my understanding, the only real way to confirm whether a lump is cancerous or not is a biopsy. Mammograms and Ultrasounds can tell doctors if there is reason to do a biopsy. But I have yet to hear of or meet a doctor who can tell just by feeling a lump in the breast if it is cancerous or not. So insist on further testing until you are satisfied that cancer has been diagnostically ruled out. You may have to push your doctor a little or a lot, or even go see a different doctor (or ask for a referral to a breast center) until you feel the doctor is concerned enough to prove to you thru medical testing that you shouldn't be concerned.

October Update

Things are going relatively smoothly here, which is good. We seem to be adjusted to fall routines and all that entails. The kids are closing in on the end of their first quarter at school and we all have enjoyed our beautiful fall weather here.

On the medical front, not much has changed, which is also good. I go for herceptin treatment every three weeks, see my oncologist's nurse practitioner once a month and have my tissue expanders expanded every so often. So I am averaging about four doctors appointments a month, which is doable. Family and friends continue to selflessly step up and so willingly take care of the two little ones while I have doctor appointments and that is so appreciated! I know that taking care of an almost 2 year old who throws a good fit every time I leave her somewhere and is hitting that age where tantrums come at the drop of a hat, and a very energetic 3 year old boy is not easy. But I am thankful that my kids get time away from me to socialize with other children and other adults. It is a little sad that anytime we take the two little ones somewhere they assume that "Mommy has to go see the doctor." and they are perplexed when another member of the family has a doctor appointment, because in the reference of their memory, I am the only one that has doctor appointments.

A little more tangible medical news I have received lately is my last Muga scan (done in early October) came back with excellent results. My heart function is remaining stable while I'm on a drug (herceptin) which can be very damaging to the heart. I have also deduced that herceptin apparently takes a toll on my skin, as well. The last few weeks I have been dealing with a very interesting skin rash that appears to be related to my herceptin treatments. Within a few hours after treatment, my body looks like I've got a case of the chicken pox. The rash doesn't itch or bother me in any way, it just looks really nasty and takes anywhere from a few days to a couple of weeks to resolve itself. The nurse practitioner's advice is to monitor this rash situation and since the rash itself does not cause any bothersome effects, continue on my herceptin schedule as planned, which makes total sense to me.

I have also been experiencing some vision issues since chemotherapy has stopped. My vision is more blurry, so the nurse practitioner advised I get my eyes checked, as the chemotherapy drugs and steroids I was on have been know to effect vision. Sure enough, I got my eyes checked, and I need glasses. I wasn't specifically told this change is due to my treatments but I was told that it is very possible treatments changed my eyes and there is the possibility that my eyes could get better the further out from treatment I get, but for now I need glasses.

Nobody told me that once you hit your 30s, everything falls apart... If I'd know that I would have had more fun in my 20s ;-). Fake boobs, glasses, very little hair, and a polka dot rash... I told my husband I'd might as well go in and get fit for my dentures next. :-) He accused me of being somewhat dramatic... ha ha. I think he may have been right. :-) Again, a little humor goes a long way.

Thank you all for your thoughts and prayers as the journey continues. I have been blessed, am blessed and will be blessed, and I challenge you to believe the same about your situation.

The Beauty of Birthdays

Today, I've been thinking an awful lot about birthdays. Probably because it is my birthday. I've been thinking about how I haven't had a birthday this special in a long time. Birthdays, for me, lost a lot of their appeal once I turned 25. That birthday was tough for me... a quarter of a century old! Yikes! That sounds ancient (I know it isn't). And ever since then I've viewed birthdays reluctantly... they're not horrible, but they served more of a reminder that I was getting old(er) then anything else for me.

Since having cancer, my view on my birthday has changed. I view my birthday a little more positively. I realize how easily I may not have celebrated this birthday, or how much harder I could have been fighting to hang onto life at this point. Today, I view my birthday as a blessing. God has seen it best that I stay on this earth into my 34th year! How cool is that?!? I'm enjoying it! Birthdays are awesome!

I've also gone from thinking about my birthday to the birth of my children and how special each one of them are to me. I cherish each of my children's "birth" days and their birthdays. They each have their own batch of memories and life changing moments.

The scenario that surrounds the birth of my fourth child keeps running through my head today. That event is so special to me because my heavenly Father sent a special message to me. I didn't hear it that day, though. Actually, it took me several months to hear that message. And now that I've heard it, it nearly brings me to tears (happy tears) every time I think about it.

You see, part of having breast cancer as a young women, is losing your fertility. Not everyone loses it and you might not lose it forever, but the treatment that you go through can make you infertile for a very long time. That was one of the first things the doctors asked me when I went to Mayo to set up my treatment plan. Was I done having children?

Now, as a mother of four, with my youngest having just turned one my response to the doctors was "Heck, yes, I'm done!". But you see, if I was in charge of our family planning, I wouldn't have been done when they asked me that question. Now, don't get me wrong... ever since deciding to try for a third child, my husband and I have wanted four kids. We had our first two almost exactly two years apart (and swore we'd never do that again). We had a nice five year gap, and then had our third. My plan was to wait about three years and then have our fourth. Spread things out a bit... so I hopefully didn't go so crazy this time :-). Well, thankfully, my heavenly Father is in charge of our family planning. You see, nine months after having my third child and as I was just managing to crawl out of a postpartum depression hole, I found out I was pregnant with my fourth. This is the only time I have ever gotten pregnant without planning it and my husband and I both were shocked that I was pregnant.

I'll be honest... I was not happy at all when I discovered I was pregnant. I was barely holding my head above water the way it was and God wanted to throw another baby at me? I'd barely had time to hold and snuggle my third child, and now I was going to have to spend the next four months with my head over a bucket trying not to puke from morning sickness, and then the next five months become progressively more whale-like, until I had two babies to care for. It wasn't supposed to work out like this... not according to my plan.

But you see, everything worked out according to God's plan. God knew my heart's desire was to have four children and God also knew that that fourth child would not happen if He allowed things to happen how I wanted them to happen. You see, if things were going to happen the way I wanted them to happen, I would have just become pregnant with my fourth child right before being diagnosed with cancer, which may have seriously compromised my treatment or I would have been planning to become pregnant very soon, and our fourth child would have never been.

It was a month or so after being diagnosed with cancer that this reality hit me and I heard my heavenly Father's message loud and clear. "I love you, my child. I am allowing things to work this way because I love you. Your child was a gift from me to you. A gift that shows you that I do care about you and what you are going through. I care enough to orchestrate the details of your life. And I'm orchestrating what you are going through right now. Even when you feel like I am working against you, child, I am working so very hard for you. I love you, my child!".

I love birthdays!