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.