Uhm, good news?

Happy November everyone!  I am super excited to write this post because…

*drum roll please*

…it’s good news!!

*applause*  *happy dance* *applause*

Yes, after 8 years of repeatedly having cancer come back and stick around, we found out last week that everything looks good!

*more happy dancing!*

While I still can’t say I’m cancer free (yet!) or say that I have beaten this for good (yet!), my appointment last week was all good news.  The most significant good news being I have NEVER been this far out from one of my surgeries without any tumors showing up on my scans.

I went to UNMC last Wednesday and met with Dr. Goldner who went over my blood work and did an ultrasound.  My tumor markers still aren’t zero, but since my ultrasound revealed no tumors, I am now in a category that is called “biochemically inconclusive.”  What this means is my blood work is showing something (could be cancer cells, could be random thyroid tissue, it’s pretty impossible to say), but my ultrasound is clean.  When my tumor markers get to zero, then we can say “no evidence of disease” (which is thyroid cancer’s version of remission), but since I’m not there yet, I am hanging out in the “biochemically inconclusive” club.

And it’s a club I have never been in since we started this 8 years ago, and my doctor said it’s possible I might stay here the rest of my life.  And I’m absolutely okay with that because being here means I can slowly begin putting the pieces of my health back together since there’s no active disease that we know of.   The pieces of my health that we’ve had to mess with to keep the cancer from growing, we are finally going to be able to consider getting things back to normal. This means I can maybe start backing down my thyroid hormone to a more normal level.  Being hyperthyroid is not easy, on my emotional or physical health (not to mention on everyone else in my household – ah!), but this is the first indicator that we needed that we are hopefully close to healing.

I use a lot of “hopefully” and “maybe’s” in this post – because there is still a lot up in the air.  We head back in February to rerun all these test, and from there, we will have a more definitive plan on what the next year will look like for us.  Until then, we are keeping everything the same (that means hyperthyroid Angela – sorry, Neel!), but at least we know that the surgery and treatment I did over this past year was worth it.  This makes putting up with the side effects of my thyroid hormone much easier to bear.

And as I have reflected on this news and shared it with my family and friends, there has been a lot “Praise God!” and “God is good!”  And yes, absolutely He is and absolutely all praise to Him for getting us here, but I keep feeling that if the news had gone the other way last week, I would still want to shout, “Praise God” and “God is good!”  Because He is, no matter what news my doctor would have given us.  Is it wrong to feel sad to see the suffering possibly coming to an end?  Because it has been in my suffering that I have truly felt the closest to Jesus.  It’s taken me a long time and many gentle whacks on the head from our Heavenly Father to understand that beauty of suffering, but now that I do, it’s finding my way again to feel His love through the absolutely ordinary, lovely, little things that I’m surrounded with.

I suppose I am a little better at resting in peace and in His trust than I have been at other times because I was feeling equally the same about either outcome before my appointment.  That peace has come through a lot of refining over these 8 years, but looking back I see the purpose.

Keep praying that everything still looks good when I get checked in February and that I can start getting back to “normal” in all aspects of my life.  A new normal it’ll be, I’m sure, but I’m looking forward to the journey on the other side of cancer.

Love to you all and have a blessed Thanksgiving!

Ang

 

It’s My Cancer-versary

I can’t believe how much our lives have changed since September 1, 2009.  8 years ago we were living in Omaha, we had just one daughter and had just found out we had #2 on the way.  Neel and I went to work that morning like usual.  We had a good life.

Our family 8 years ago

Then around lunch time, I got a call on my cell phone at work.  It was the call you always hope you never get.  “You have cancer.”  Those moments – exactly what the doctor said, where I was standing when she said it, the weather outside, so many details, are frozen in my head.  I can go back to that moment so easily.

As I look back over these last years, the one thing I am most grateful for today is I have had doctors that have let us live our life without letting cancer get in the way.  Both my endocrinologist and surgeon have been so supportive of us expanding our family even though I still have had active disease!  What an absolute blessing that is.  Not every doctor would do this – we might not have our beautiful little girls (and some doctors might have even wanted us not to have Leo!) if we had been with a different medical team who wasn’t so open to life.

I said we had a good life 8 years ago – but I had no idea how good it was going to get.  Seriously…there have been many hard times, dark times, painful times, and depressing times, but these last 8 years have given us the perspective that there is meaning and growth in the suffering, and that each day is truly such a gift.

There are so many other ways I am thankful today – but mostly I keep coming back to how grateful I am for my doctors.  For them keeping me healthy enough to get to love on four beautiful kiddos every day, and to wake up each morning to my amazingly strong and selfless husband.  God certainly led me to these doctors (for real He did…I need to write about that someday, too…)

Our family today – so very thankful.

A quick medical update – I had appointments both in May and July, and everything was looking good!  My ultrasound is clear (yeah!) and my tumor markers were lower (yeah!).  My radiation can take 6 – 12 months to still work, so I go back in November for a scan and blood work which will really be a good indication if my radiation in March was successful.  I am feeling well and certainly have lots of distractions to make the time between appointments go super fast.

God’s blessings to all of you and thank you for always reading these and praying for us.

Love, Ang

 

Post RAI

I wanted to give a quick update about how things have been since my radiation treatment.

First, a little background for those who don’t know what Radioactive Iodine (RAI) is used in thyroid cancer.  Thyroid cells are the only cells in your body that take up iodine.  This makes thyroid cancer highly treatable, since those cells can be targeted easily.  Giving a patient radioactive iodine targets just my thyroid cells (in my case my thyroid cells are where the cancer is) and kills them off, thus killing the cancer.  It’s also why I do the low-iodine diet beforehand to starve my body for iodine, making the treatment more effective.

I was given a dose on the higher-than-average scale because of my history.  A radiologist reviews scans, bloodwork and my history and prescribes the dose (along with consulting with Dr. Goldner).  He sends the prescription in and we wait about an hour and half for it be delivered.  Radioactive material can’t sit on a pharmacy shelf, obviously, so it’s mixed up at a special pharmacy (there’s only one in Omaha that services the whole state), and delivered right to me in a lead container.

It’s actually quite anti-climatic taking it.  No one comes in lead-lined suits or haz-mat gear.  They hand my a plastic vile with two pills and with a little water, down it goes!

I had to wait for about 2 hours for my radiation levels to be safe enough to leave (yep, they use a geiger counter for this!) and we go straight back to my parents house.  I couldn’t eat more than a couple servings of fruit and very little water on Friday.  This is to maximize absorption.  The radiologist joked that it’s the “starvation diet.”  And he would be right.  The side effects I had were mainly from the starvation rather than the pill.

But making it through to Saturday when I could finally eat some soup comfortably, things started to come around and I’ve been steadily feeling great ever since.  We are waiting for my next scan on Friday and then I will be re-measured to see if I’m safe to go home and be around my children.  Really hoping that I am!

I keep going back to the sentiments from my last post. I am technically in “isolation” but I haven’t felt alone once.  My friends and family are the best.  I have the best caregivers here in Omaha making sure I’m well (thank you mom, dad and sis!) and we have a whole army of friends and family who are taking care of our crew in Kenesaw (thank you Grannie, Big Guy, our church family and Kenesaw friends!).  I’m truly speechless on how grateful I feel for all those who are supporting us.  There truly are no words adequate for my thanks.  It’s brought me to my knees in thanksgiving several times that my heavenly Father has blessed my life with beautiful people to care for me this way.

Thank you to everyone for being there for us.  Love you all.  Please pray that my scan looks good on Friday and that I am “safe” enough to go home and hug my precious kids and see my husband.

Love, Ang

 

I did not get cancer

Today is eviction day.  It’s when I am given radioactive iodine to kill all the remaining cancer cells.  This will be it – this will get me closer to being cancer free.

But today, there is something that needs to be said.  I did not get cancer.

WE got cancer.

When this disease presented itself September 1, 2009, it didn’t just mess with my life, but my family and my friends.

My husband got cancer.  He has had to do things for his wife that you usually associate with old age and the “growing old” phase.  He has had to be my shoulder to cry on and calm my fears each and every time I have feared what my fate could be.  He has had to be Mr. Mom many, many times.  He’s been my caretaker – a role that is just as important as any one of my doctors.  He’s the rock – there’s no other way to say it.  He keeps our world on track when it so easily feels like it’s spinning out of control.  That “sickness and health” vow – there’s no question Neel meant it.  It has not been easy, but my husband is made from some tough stuff.

My parents got cancer.  They have missed work and rearranged schedules so many times to be there to take me to appointments, drive to the Mayo clinic, cook me special meals, care for my children, and be there for each of my surgeries and treatments.  They have had to watch their child go through many painful experiences, which as a parent myself, I know is a gut-wrenching and helpless feeling.

My in-laws got cancer.  My mother & father-in-law fill in for Neel and I all.the.time. as we often head off to Omaha for things and they never complain.  They constantly offer a tender hug and lots of support as we have faced bad news after bad news.  They even did the low-iodine diet with me this time to show support.  I felt this way even before cancer, but have felt this way 100-fold now, that I seriously won the lottery when it comes to in-laws.

My children got cancer.  You guys…this is the hardest paragraph to write.  My children don’t know a world where their mom doesn’t have cancer.  Which is good in the sense it’s not super scary to them, because they are used to this disease creeping in every few months when we have appointments and check-ups.  But I long for the day when we aren’t uprooting their lives all the time as Neel and I leave for doctors visits.  And the stress of living with cancer has stolen more moments than I care to admit from me and being a happy mom for them.

My siblings got cancer.  We come from the same parents and were raised in the same environment, but only one of us ended up battling cancer.  I’m sure there are a lot of “why not me?” questions for them, trying to make sense of it.  But my brother and sister (and I’m blessed with amazing brothers-in-law and sisters-in-law, too!), get me so well and have lifted me up so many times that even though I may be the one doing the physical fighting, they have never let me feel alone in this fight.

My friends got cancer.  Instead having conversations about just our kids, husbands, houses, work (and there’s still plenty of that!), we also talk about cancer – in our twenties and now thirties!  It’s not natural – life is stressful enough in this phase that all of us facing our mortality like this is tough.  But I have the best friends ever – they give of their time, money, and thankfully their cooking skills, and we have been supported each and every day by friends and neighbors who care for us.  It’s been hard at times to receive this help, very humbling, but it’s been a huge lesson for me on how much it means when someone does take the time to call, text, write or check-in.  It’s hard to know what to say when someone is going through cancer treatment, myself included, but I can tell you that saying something is better than saying nothing.  I can’t wait to start repaying all the acts of kindness we have received.

There are people that do this alone.  I have no idea how.  My heart hurts for them, and I will always pray for them.  Going into today, I feel so blessed that although there are lot of feelings, alone is not one of them.

Thank you, God, for each and every person you have placed in my life.  Cancer did not  just invade my body, but all those around me.  And I’m thankful for all those who are rallying with me to kick cancer back out.

Please say a prayer that treatment today WORKS and cancer never returns.  God bless you all!

–Ang

Here we “glow” again

First, I have to say a HUGE thank you to so many of you who shared encouraging words, sent some awesome books, cards, and care packages – did I sound defeated in my last post? I was a little bit for sure, but wow, each hard day I had, something seemed to arrive in the mail or my inbox that cheered me up. I never want to seem “woe is me” on here, so sometimes I hesitate before writing each post. But so many have shared that they enjoy reading these and it really encourages me to keep this up. Plus writing on here is cheap therapy for me!

I last left off with the decision to watch and wait or do radioactive iodine again.  Each step we’ve taken in this journey up until now seemed so clear.  The answer to whether or not to do a surgery, treatment, radiation, wait always seemed to be super obvious and “felt right.”

Can’t forget to mention this guys who turned 7 on March 3rd. He is a constant reminder of what we’ve been able to accomplish despite the cancer. Love you, Leo!

There has been none of that this time.  My doctors and those closest to me did a good job at letting me have my space to decide, but they all were in favor of doing RAI.  If that was the right decision, why did I not feel like it was right?

It’s been a struggle.  I’ve prayed about it a lot and it never helped me feel better about doing RAI.  But it’s hard to separate my own personal feelings of just not wanting to go through the huge life disruption that is RAI.  Was it that I didn’t want to do the stupid low-iodine diet?  figure out how to juggle my four children, work and commitments at home while being gone 10 days?  was it the side-effects of the treatment?  is it how this effects the number of children we have?  or was it something more, was this really not the right step and God was placing this on my heart to say no right now.

I didn’t know – and then a lump in my neck showed up.  About two weeks ago, one of the kids brushed up against my neck and I felt the “fullness” that I had felt for the 5 years I had tumors in there.  I thought it was just in my head.  But it wasn’t.  Feeling around and moving around, the fullness was definitely back.

Last January at my scan, I thought it was so awesome to not feel the swollen-ness I had always felt because now the tumors were gone.  But it was back now.

I really felt like it was in my head, because I knew thyroid cancer didn’t grow that fast.  But was it something else?  Was it just new lymph nodes flaring up for completely normal reasons?  Or was something going on that needed to be addressed surgically and this is why I didn’t feel good about doing RAI?

After trying to be my own MD, realizing that is quite a waste of time, I called my endocrinologist who said to come in and get scanned.

So yesterday I went to UNMC and saw Dr. Goldner who did a complete scan of my neck by ultrasound.  After being showed that one of the lumps I had been feeling was actually my jugular vein (whoops!), she did see another lump that I had been feeling, but it was NOT a lymph node and was not a mass.  It appeared to be the way the scar tissue was healing.  This is why I did not feel this in January, as scars usually start smooth and then can form a bump.  Everything else on the scan looked good.  It made us all more confident that the disease that is left is microscopic and RAI is the exact treatment to clear it up.

So, I would say after the appointment I went from feeling 0% good about doing RAI to 75% good (I suppose no one ever feels 100% about a treatment that you can’t eat cheese on!).  But I am thankful I went in and saw my doctor and thankful that I feel confident about the decision to do RAI.  I prayed for clarity…and I received it.

So today is Day 1 of the low-iodine diet.  Yesterday was a sort of “fat tuesday” with lots of creamer in my coffee, runza for lunch, mcflurry for a snack, and Godfather’s pizza for dinner (with a dessert pizza – mmmm, butter!  I froze what I couldn’t eat to enjoy when I’m done!).  Today begins label reading, meal planning, and making everything from scratch.

I head to Omaha March 22 where I receive an injection for two days, and then receive RAI on March 24.  I get rescanned March 31st where they will tell me when I get to come home (depends on how radioactive I am yet).

We are so thankful for family, here at home and in Omaha, that we will rely on a ton to make all this work.  This isn’t anything we could on our own.  Please pray for my kids (and husband!) as they have to navigate a week and half without mom.  They will be in good hands, but it’s still a huge disruption for us.

And please pray that this WORKS!  I have to be totally honest that even though I know this is the right next step, I am so cautious to actually let myself think this could be the end of the cancer.  I’m praying for that TRUST thing I write about over and over again.  I know He is good and will use this to bring about good for all of us, too.

Thank you for reading and I will post again soon – probably when I’m “glowing.”

 

 

 

I didn’t want to write this

It’s true.  I’ve been dragging my feet, dreading writing this post.  Mostly because I have been struggling with how to deal with our recent news, and I couldn’t even make sense of it and put it into words.

My baby, Magdalene, turned 2 on the 14th – our journey has been a constant battle of making decisions that make me a good mom now and ensuring I can be a good mom for them for many years to come.

I had my check up two weeks ago at UNMC.  We left home at 6am to make my 9am appointment.  We didn’t have to wait long for the doctor to come in and tell us that my tumor markers, the ones we had all prayed would trend down or become zero, were virtually the same.

T.h.e.s.a.m.e.

Really?  Really.

Ugh…she then presents the options…

1.  Watch and wait.  Although there really is no indication that things will improve on their own at this point since over the last 8 weeks nothing has improved.  But we do have a little time to see if things change on their own, or just wait out and hope things remain stable.
2. Do Radioactive Iodine treatment (RAI).  I have done this treatment before and the cancer came back, but she is hopeful this time all that’s left is microscopic disease which RAI is good for.  I did have some uptake when I had this done the first time, which means I’m not totally unresponsive to it, and this could get rid of the cancer once and for all.  But there’s risks going through this a second time…
3. External beam radiation.  This is more of your traditional cancer radiation therapy where they beam my neck externally for the course of days/weeks.  This doesn’t have the side effects like ingesting nuclear material like option 2, but has risks of causing damage to areas of my neck.  She also said she would hate to skip to this option without trying option 2 first.

As I’m writing this, I’m getting the nauseous feeling in my stomach that I did that morning of my appointment.  I suppose that’s why I didn’t want to write this…avoidance has been my coping mechanism this time.  But I do want to keep people in the loop and I know the power of all your prayers this time is needed more than ever.

Now, there was some good news at this appointment.  She did an ultrasound of my neck and saw nothing of concern.  This is a great news!  This also indicates that it’s  more than likely microscopic disease left that is making my tumor marker detectable.

So, here we are…facing treatment decisions and I have absolutely no clue what to do.  Going through RAI seems like a no-brainer at times, and I know that is what my doctor would like me to do, but I feel like I have done all these steps before and it’s always left me right back in the same place.  Why go through all the disruption to my life and negative side-effects of doing RAI when living with stable cancer isn’t all that bad for me.

But my cancer may not always stay stable…

And that is what we are praying and pleading God for guidance for our next step.  We hope you will do the same for us.

A friend gave me book that has been so helpful to me in making sense of these recent setbacks.  I keep coming back to what the author says here:

I’d like to direct you to one more snapshot from Scripture that completes the picture of God’s provision in times of pain.  You’ll find it in John 15:1-8.  In this passage, Jesus borrows a word picture from the plant kingdom.  He explains that because He loves us, He must do some pruning in order for us to thrive and blossom…But the Gardener is loving and devoted.  Someone has said, ‘The Father is never closer to the vine than when He is pruning it.’

I feel this is where I am…there is more pruning to be done.  And although I feel so picked over in this moment, I deep down know that this further trial will bear great fruit someday.  And that hindsight will come and I will look back and these moments will make perfect sense.

Until then, we are seeking His guidance for our next steps.  Although the twists and turns in this journey have been difficult, God has always provided the clarity we needed to make a good decision.  We ask that you join us in prayer that we receive that clarity one more time to help us decide what to do.

With love,
Ang

A Second Perspective

Hello everyone,

I’ve been asked again how my cancer was first discovered. This picture was taken around the time my original thyroid nodule was discovered by my midwife after I had Helen – in 2008. I had no symptoms – so it is crucial that you make sure your physician checks your neck.

I appreciate all the prayers and comments that I received since my last post.  So many of you shared in our disappointment and it means so much to know that we are not alone.  And I have felt so much more at peace since I posted my Dear Cancer letter…certainly a work of all the prayers promised by you all!

Last week I called my surgeon to get his perspective on our next steps.  He knows my neck well, having been pretty up close and personal with it.  He was also the one who was so optimistic that I wouldn’t need anymore treatment – this was without knowing the tumor marker number, though.

This is from around Helen’s first birthday – we had just found out we were expecting again, but before we found out my thyroid nodule was cancerous.

We talked and he sounded just as bummed as we are about the tumor marker number not being lower.  Knowing this, he recommends going through Radioactive Iodine Treatment (RAI).  He said he came to this conclusion because he is worried that the remaining disease might be around my nerve that the third tumor was on.  Surgically it would have been near impossible to get every single cancer cell off that nerve without doing nerve damage, so there might be some remnants there.  And really, we would NOT want those cells to grow into a mass, because surgery then would be extremely difficult and possibly cause all those negative side effects from sympathetic nerve damage.  RAI would be a reasonable treatment to hopefully knock out the microscopic disease left in my neck.

So, although this is the bad news, he said the good news is I can take Thyrogen injections to prepare for RAI, and I don’t have to go off my thyroid hormone.  He said in cases like this, going off my thyroid hormone for an extended period of time would act like a growth hormone to my thyroid cancer that they know is in there, which wouldn’t be good.  Being able to do the injections is good news because symptoms can be horrendous going without thyroid medication for extended periods of time.

I asked him what he would do if we go back in January and my tumor markers have gone down.  He said he wouldn’t do anything then…he would watch and wait to see if they go down to undetectable on their own.

Here is a pic after being diagnosed with cancer but before my first surgery. Helen is 14 months old here.

I can’t begin to describe how much better I felt after talking to him.  Did he give us better news than what we had heard the week before?  Not really.  But I think what helped is understanding that the remaining disease might be on my nerve – and thinking about what cancer could do if it grew on my nerve is enough for me to face RAI much more definitively knowing that I would hopefully be preventing nerve damage.  This to me out weighs the possible negative side effects of doing RAI.

But I still hope for my tumor markers to go down on their own – that would be the prayer I hope you all join me in praying.  My next appointment is January 18 – we will know so much more then.  Until then, everyone have a Merry Christmas and a Happy New Year!  I have so much to be thankful for – and I’m going to enjoy every second.

Love,
Ang

PS: My main computer is in the shop, so I’m typing on my old laptop – hence the old photos. There are some days I would love to go back to a time before cancer – but on the other hand, the perspective in which we view the world because of cancer is something that I am grateful for, too. Each day means a little more than it ever did before.

Dear Cancer

I thought we were done.  We’ve hung out for 7 years.  You’ve tried to extend your stay several times, but I hope you understand that by undergoing 4 surgeries and radiation, that we didn’t really want you around permanently.

You really tricked us this last surgery – we really thought we were done with you. Everything felt different.  I had an excellent surgeon who even found your third friend that we hadn’t seen before on the scans.

But this is what you do…you give false hope, and then another punch…and this time it was right in the gut.  I am so over you.

Get.the.hell.out…you have 8 weeks before we blast you with radioactive material again.  Let’s leave on good terms before that happens.

Sincerely,
Angela

---

It’s true…I still have cancer…we’re not done.  Do I sound like a broken record?  It feels that way.  It’s because I am in the exact same place I have been in before.  And we are all tired of it.  But it’s reality – and also why we are again asking for mega prayers these next 8 weeks.

Last Wednesday we had my check up at UNMC.  It has been six weeks since my surgery and the crucial tumor-marker number would show if there was still residual cancer or not.  The goal would be to have this number as close to zero as possible.

It was 1.6

This may seem close enough to zero, and it did go down since my last blood draw before surgery, but because it isn’t down enough, it most likely means there’s microscopic disease left.  Cancer that my surgeon could not have seen.  Going over the pathology reports also showed some extension into the tissue from the areas where they removed the tumors.  This also indicates that microscopic disease could have been left behind.

She drew a picture for me – of a circle representing the tumor that was removed with little dots around it.  Then a rectangle around that representing the whole area that was removed around the tumor.  Since the little dots went outside the circle (the dots are the microscopic disease), there could be little dots, or disease, left behind outside the rectangle, or left in my neck.

Deja vu.

Literally.  This is the exact drawing she drew at my VERY FIRST APPOINTMENT seven years ago.  How am I in the exact same spot I was at the very beginning?

At this point, you may be questioning the care I am receiving.  I would be, too.  But this happens sometimes.  We were also in this exact same place 5 years ago when we went to the Mayo Clinic for a second opinion, and they recommended the exact set of steps UNMC was recommending.  The doctor up there said sometimes thyroid cancer acts like this – and people every few years need surgery or treatment to keep knocking it out.

And it feels like a super, sordid game of whack-a-mole.

We were crushed at this appointment.  Although I did not go in expecting to pop the champagne bottle, I was NOT expecting this.  As she is drawing this picture for me, I knew what she was going to say next.  Because it’s exactly what she recommended 7 years ago.

RADIOACTIVE IODINE TREATMENT (RAI).

Now, as far as cancer treatments go, this isn’t the worst thing – and I need to remember that.  But this treatment does have risks, and even higher risks now facing it a second time.  Secondary cancers, permanent dry mouth, dry eyes, losing your sense of taste, salivary gland damage, and not having children for at least a year…ugh…plus a special diet preparing for the radiation, possibly going off my thyroid hormone to go completely hypo-thyroid to prepare for the treatment, and then being isolated for 10 days while the radiation wears off.

Isn’t there a bright side?  Angela, you always show us the bright side…

I’m trying guys…I really am…the bright side I suppose is we have 8 weeks to pray like crazy that my tumor markers go down on their own.  My doctor was prepared if we wanted to do RAI right away (like miss Christmas??  no thanks…) but said that we could re-draw my labs in 8 weeks and see what the markers are then, plus then be able to scan my neck and see if there’s any disease that shows up there.  She said typically your tumor markers 6-weeks post-surgery is what it will stay, but some people do take longer to go down.

Also, by waiting 8 weeks to re-check and doing a neck ultrasound then, we can see if there’s any disease or tumors that show up on there – and if so, it would mean surgery.  We couldn’t do a scan at this appointment because there was still too much scar tissue from surgery.  If thyroid cancer is big enough to be seen on a scan, RAI is not usually strong enough to knock it out, and is why surgery is the best treatment. Seriously…facing a fifth surgery?

So in 8-weeks at my next appointment we will have a lot more of the pieces to make a decision.  And the choice is ours – we can decide to forego RAI, keep my thyroid level suppressed, and continue to be checked every six months…pretty much keep doing what we’ve been doing for the past 7 years.  But I would never be cancer free.  And as much as I love my docs, I am ready to not see them anymore.

So please, say a prayer that my tumor markers will continue to go down on their own so we don’t have to undergo RAI treatment again.  I seem to usually be in the small percentage of cases for everything, so this time I would love to be in the small percentage of patients where my tumor-markers take longer to reach zero.

I know looking back on this I will see the reason for the continued trial – there is always a reason I have learned.  But for right now, I am going to try to not let cancer steal the next 8-weeks from me and hope for the very best.  I know whatever happens, I have the best family and friends surrounding me, and we will be okay.

–Angela

PS: I had fun finding sarcastic, snarky cancer memes and images for this post.  I’ll go back to my cute kids for the next one.

Surgery follow-up – more to the story

It has been almost two weeks since my surgery and I am feeling good!  However, I am carrying about 10 extra pounds from all the delicious meals that people have been bringing!  🙂

The first ten days were spent taking it easy, and my super-duper husband took care of our clan and me.  I always knew he was amazing, but now I REALLY know!  A mom of four can rarely “take it easy,” even after a surgery like mine, but Neel (with the help of friends and family), really made sure I did and it made all the difference.

I had my follow up yesterday with the surgeon (aka the miracle man!).  I couldn’t help but give him a huge hug.  Because of his skill, the cancer is out – even the cancer we didn’t know was there until he was in operating.  I asked him about that…

“What made you keep looking in my neck after you had removed the two areas we knew about?” I asked.

He said that as he was inspecting the area after the two chains of lymph nodes had been removed, he was looking at the network of nerves, the tissue, and the anatomy of my neck.  He noticed a slight bulge that didn’t look right.  He investigated and that’s when he felt the third tumor.  But he didn’t know if it was cancer, he just knew it didn’t belong there.  It was about 11mm in size.

He also said the way it was attached to my sympathetic nerve, there was a high chance after the surgery I would have had all those symptoms I wrote about in my last blog (dialated right pupil, droopy eye lid, inability to sweat on half my face – also called Horner’s syndrome).  But I had none of that! (I told you he was a good surgeon!).  He also said that if he hadn’t removed it, not only would I still have cancer in my neck, but I would have started showing these symptoms eventually, and I would have needed another surgery to prevent the nerve damage.

He couldn’t explain why this cancer tumor wasn’t on any scan – and it’s hard to know how long it had been there.  But it is OUT!

And guys, if there was ever a doubt I shouldn’t have done this surgery, well there’s no doubt now.  We all prayed we would be led to what we should do, and we felt like we were being steered toward surgery – well, God always steers well, and led us to exactly what we needed to do to get well.  He is the ultimate healer – using one amazing surgeon to do the work.

I feel like I am forever changed for the 100th time in this journey – and yet each of those 100 changes are perhaps the same change over and over.  Trust the Lord…trust…trust…trust…

The other great news is the Methodist tumor board met about my case and because only 3 of 20 lymph nodes removed were cancerous, and because there was little extension, no further treatment is recommended at this time.  This means no radioactive iodine treatment – wahoo!  This is an awful three week process between a special diet, isolation, and staying away from my family.  I’ve done that once and do NOT want to do it again.

The next big milestone will be my blood work results that we will find out around Thanksgiving.  If my tumor markers are decreasing (or hopefully undetectable), we will know that the cancer is gone.  Nothing happens quickly with thyroid cancer – so we will be in the holding pattern until then, but life keeps us plenty busy so I’m sure it will go fast.

Thank you for everyone who has helped us out the past two weeks – the meals, picking up our kids, watching our kids, phone calls, texts, and of course all the prayers.  Times like this in your life you rely on your village – and mine totally came through.  Thank you, all!

Love,
Ang

PS:  Two other superstars from the last two weeks need a mention – my bookends, Helen and Magdalene.  Helen, age 8, was the little mommy to the rest of the kiddos while I couldn’t lift or move too well.  She never complained and I was again reminded the special graces God gave our oldest.

And Magdalene, a HUGE mommy’s girl, somehow knew something was going on and didn’t complain when I couldn’t pick her up, be the one to change her or put her to bed.  She was happy to be with whoever was helping out – something she hardly has EVER done.

 

 

Fourth Surgery’s a Charm

This week is ending on a good note – or really, a GREAT note.  My surgeon called this afternoon with the pathology report results.

Before I reveal those (a little suspense…sorry!), I have to tell you why so the pathology report was so crucial.

Pre-surgery selfie – documenting my neck before the second scar.

My surgery was Wednesday morning at 7:30 am, and they told me it would take about an hour.  When I finally wake up and start looking around, I realize that it’s nearly 10:30am.  I wondered what had taken so long.

It wasn’t too long after waking up my family is able to come into the room, and they tell me about what the surgeon had told them after he was done with my surgery.  The two lymph nodes they had been watching were removed and he was fairly certain he got clear margins and minimal affect to the nerves in that area.

After removing those two areas, he feels around my neck for anything else.  He is very thorough, and in this part of the surgery, he feels another mass.  It’s hard, attached to a nerve, and decent size.  The surgeon has no idea what it is, but knows it’s not supposed to be in my neck.

Waking up and hearing the news that all went well.

The nerve that it’s attached to is the sympthathetic nerve, which controls my right eye lid, my ability to sweat on the right side of my face, and some other things I can’t remember right now – so maybe it controls part of my memory – ha!  They worked meticulously to remove this mass without doing damage to this nerve.  They removed one fiber from the this nerve, but were able to remove the mass successfully.  The surgeon’s guess was maybe it was a “schwannoma”, a benign tumor that can form on the sheath of a nerve.  It also could have been more papillary thyroid cancer.  Only pathology would be able to tell us.

I tried not to worry about it – because bottom line is he was able to remove it, so even if it’s something new going on, it was still out.  I didn’t want to update here until we knew what this mass was, because I didn’t want to be too optimistic or pessimistic. The surgeon told us the soonest he would probably know is Saturday, most likely Monday.

But he calls today!  He tells me that in what he removed, there were 20 lymph nodes, 3 tested positive for papillary thyroid cancer.  The mass he didn’t know what was turned out to be a lymph node just like the other two spots, and it was cancerous.  But all the margins are clear and there is no indication that there’s any cancer remaining.  He had already talked to my endocrinologist, and they both agree that we can just watch and wait to see what my blood work looks like before seeing if any further treatment in necessary.

It’s still a little hard for me to get super excited, because we have been here before and have had cancer return, BUT, I am choosing today to celebrate this victory!  The cancer for all we can tell is GONE!  And the pathology results definitely reveal that it was a good thing we did surgery when we did.  I am glad we decided to act now.

Waving to my kids before school.

The other thought I keep having is how incredibly blessed I feel that my surgeon took the time to inspect my neck and found the third mass.  This mass wasn’t on any ultrasound, wasn’t on my CT scan, wasn’t on anyone’s radar!  He could have easily removed the two we knew about and moved on, still leaving cancer in and not being any further along than where we were.  But I have no doubt God worked through him, guided him to the tumor, and aided him carefully removing it without doing any nerve damage.  This is a miracle…this is the healing so many of us had been praying for.

I am very sore (ya know, kinda feel like I had someone digging around in my neck for a few hours!), but this temporary pain is well worth it to get to enjoy what I hope is a lifetime ahead of me of holding my husband’s hand, snuggling with my children, spending time with my family, and all of us growing old together.

Thank you, from the bottom of my heart, thank you to everyone near and far who has prayed for us, checked in with us, brought us and is bringing us food, and all the other little ways we have been lifted up by our friends and families.  The battle isn’t won quite yet, but cancer just got one heck of an eviction notice.

Tonight, nothing but prayers of thanksgiving – for all of you, and especially my surgeon.  My blood work won’t be taken for six weeks, as it can take that long for an accurate reading of my tumor markers post-surgery, but I will keep everyone posted.

Everyone have a great weekend!  Enjoy every minute.

Love,
Ang