Cancer Update

Thyroid Cancer - Healthy cells on the right and cancer craziness on the left.  This isn't from my tumor, it's just a photo I found on line.

 I've had an interesting little 'detour'  on my cancer 'journey'.  My calcitonin (the blood marker for Medullary Thyroid cancer) has remained relatively stable since my 2nd surgery in 2016.  I have been on 'Wait and Watch' with blood work every 6 months and a visit to my specialist in Portland with an ultrasound once a year.  In December my calcitonin went up from a stable 61 to 133.  That's a 72 point jump; more than doubling.  Studies have shown that the long-term prognosis of Medullary Thyroid Cancer depends on the rate at which the calcitonin level doubles.  Doubling in 6 months is a warning sign that the disease is progressing. Yes, I was nervous.

Dr. Madison decided to check the levels again in March and it was  179 - a 46 point jump so he added a Pet scan to my June visit but also gave orders for one more blood test at the end of May. I was definitely riding the anxiety train. 

Guess what?  The May test showed a drop of 104 points - right back down to near where it had been.

The PET scan and Ultrasound showed no new disease.

First question to Dr. Madison - what could cause a 100 point jump and a 100 point drop?????

Turns out that the culprit was......

I have had some mild stomach discomfort and was prescribed this to hopefully help.  I started taking in in November and stopped in early May since I couldn't really see that it helped all that much. Corresponds perfectly with my rise and fall in calcitonin.

I had no idea of this drug interaction.

Mystery solved!

Cancer is stable as it has been since after my 2nd surgery in 2016.

Perfect Portland Weekend

George and I had a perfect weekend in Portland.  The purpose of the visit was so that I could see my doctor in person for the first time since September of 2019.  Normally I have an ultrasound and a visit with him every 6 months.  That has not been possible during the pandemic. I kept having my 6 month blood work done here in Boise.  It  remained stable and Dr. Madison and I have had a couple of phone visits.  Our plan was for me to come see him after I was vaccinated and also have an ultrasound and CT scan at OHSU in the beautiful new building down by the river.  As soon as we were both vaccinated, we made plans to drive over for a long weekend.  The doctor's visit would be the perfect time to catch up with friends in Portland and, of course, with Scott.

So happy to report that my blood work has remained virtually unchanged and there is nothing remarkable on either my CT scan or my ultrasound.  The cancer marker called Calcitonin is rising ever so slowly but the numbers are nothing to get excited about.  The new plan is to have blood work in Boise in 6 months and see him again in a year.  I am so thankful that this cancer is behaving itself.  Again Dr. Madison reiterated that while I will die WITH this cancer, there is a good chance I won't die OF Medullary Thyroid Cancer.

Doctor visit done, we could then concentrate on having fun with Scott and friends.....and eating out way too much! FYI, I gained 2 pounds and George lost 1.   There is no justice.

First we had a fun meal with Scott at our favorite pizza place, Pieology.  I love these 'pick your own ingredients' pizza places. George gets the equivalent of his Barcelona favorite pizza, the Rodeo, which has a barbecue sauce and lots and lots of bacon.  I enjoy a pizza with chicken and Gorgonzola  and Scott sticks with the tried and true Margarita.

Speaking of Scott, he is doing so well.  He got a new job working at a company that does restorations and renovations so he is learning lots of great skills!  After about 5 years working at Starbucks he was especially excited NOT to have to get up several days a week at 3:30 a.m. to open.  He is still coaching some soccer and working at a stable.  In fact, he will be moving into an apartment at the stables in July. We are so happy for him and proud of how well he is doing.  Seeing my 'horse crazy' boy spending time with his lifelong love puts a smile on my face!

We had two dinners with friends.  Friday night with my walking buddies and husbands at a delicious Chinese restaurant and Saturday with our old monthly dinner group!  Friday we were so busy talking  that I forgot to take a photo but remembered on Saturday.  I really miss our Lake Oswego friends.

Every Thursday for all the years we lived in Lake Oswego, George and his good friend Larry went to lunch at Burgerville in Wilsonville.  Larry passed away last June and this was our first time back since his death.  We stayed with Martha, Larry's widow, and did enjoy a Burgerville lunch in his honor.

George also did a few projects for Martha around her home.  Unfortunately she has squirrels who are calling her attic home.  George verified their residency but she will need to hire someone to evict them!

While George did projects, I attended a fun baby shower/lunch with my Kenya Keys friends.  Judith, who is a Kenyan serving on the board, had a baby during the pandemic.  It was a joy to finally be able to celebrate her little girl in Rinda's beautiful backyard .

I have always thought that there was nothing prettier than a sunny day in Portland with Mt. Hood, in all her glory, keeping watch on the city.  I still think so.

 

Cancer Update

My calcitonin continues to stay under 40.  Calcitonin is the marker that is looked for in the semi-annual blood tests for those with Medullary Thyroid Cancer.  Most people with metastasis have numbers in the 1000s or even 10,000. This means that while I still have cancer cells somewhere in my body, they are too small to show up on a scan or ultrasound.  I still have no symptoms at all from the cancer, just a little tightness in my neck on the right side where I had surgery in 2016. I have almost complete mobility and it doesn't affect my daily life at all.  I am very blessed.

The biggest excitement this year was at my appointment in September when my doctor casually mentioned that my 2017 scan had shown 2 kidney stones.  Now I have had absolutely no symptoms of a kidney stone.  I know how painful they are because all my children and George have had them.  He suggested I have a renal ultrasound to see what was going on in my kidneys.

The excitement was that I was leaving in just a few days to go to Kenya where there is practically NO medical care at all.  The logical part of my brain reminded me that I had felt nothing for 2 years and was unlikely to suddenly have a problem.  But the illogical part kept thinking WELL IT COULD HAPPEN!  I flew off to Kenya.  After waking up with a slight back ache for 2 mornings, I was starting to get panicky until my roommate mentioned that her back hurt too and we realized that you could feel the slats of the bed through the very thin mattress.  Panic averted!

When I got home I had a renal ultrasound and there were no stones present.  I guess they passed on their own.  I'm thankful. So I am still on 'wait and watch' with twice a year trips to my doctor in Portland who is a Medullary Cancer expert.

Day in Portland - Cancer Update

The most important directive when you have a rare cancer is to find a specialist who sees many patients with your type of cancer.  I have such a doctor in Portland.  I've been seeing him every 6 months for a checkup which includes blood work and an ultrasound.  In May when I made my next appointment, I had no idea that I would be living in Eagle, Idaho in December, so rather than a quick drive to OHSU, this appointment meant a flight to Portland for the day.

My 6:00 a.m. flight was on time and I got on the TriMet train at the airport.  Cheap, efficient and very easy!   It's extra cheap for 'honored citizens' like me....that is a nicer term than senior citizens although it still just means OLD!

 The train whisked me to downtown Portland where a city bus took me to the lower campus of OHSU. 

 From there it was an easy trip on the tram to the main hospital where my doctor's office is located.  Yes it was raining! 

I had plenty of time for a hot chocolate before my ultrasound and office visit with Dr. Madison.  And it was, drum roll please....

My calcitonin, which is the marker they use to see if there is spread of the disease, has actually gone down a little bit and my ultrasound showed nothing unusual.  I still have cancer but for now it is behaving itself.  Yeah!!!!

I'll have more blood work in Boise in six months .  He suggested that my next appointment should be in a year but I talked him into letting me come in September instead.  Flights are cheaper.  Calendars aren't as full. I have the option of driving since there won't be snow on the mountain passes.  And September in Portland is beautiful.  

On this visit I got to enjoy lunch with a few of my good friends.  One of them even took time out of her busy schedule to take me back to the airport.  Next visit we already have a lunch scheduled at Skamania Lodge with our friends the Helmandollars...I'm envisioning other dinners with friends and a visit to Lakeridge Ward on Sunday.

Now all I have to do is ENJOY CHRISTMAS!  That is going to be easy and fun!

Cancer Update

It's time for a cancer update from this 'Meddie'...that is what people with Medullary Thyroid Cancer call themselves.  About 3.4 % of all cancers are thyroid cancer and only 3% of those are Medullary so we are a pretty exclusive club!  Like I've said before it is the club no one hopes to join!

Once again the phrase, "No news is good news' applies. I met with my doctor in November and had blood work, neck ultrasound and a CT scan all of which were in his words 'unremarkable'.  My calcitonin numbers have never gone down to 0 so they never will but they are still low enough to keep both my doctor and me -  HAPPY!

I have almost complete range of motion from my right shoulder again -  16 months post surgery.   There are still numb areas on that side of my neck and shoulder and I understand  that the feeling probably will never return but that isn't a big deal to me.  I feel absolutely fine and have my normal energy.  Truthfully I've never had any symptoms from the cancer itself, only from the after effects of the surgery.

I know that there are no good cancers but so far this one isn't too bad.  It is mostly the word CANCER that is scary but I don't dwell on it and just try to live each day with joy!

Cancer Update

I think it is time for a cancer update.

Just a recap of my cancer journey these last few years.

A suspicious lump on my neck that I just happened to discover when talking to someone about their thyroid problems led to a biopsy and surgery to remove my thyroid in early 2013.  The surgeon supposed that if the nodule were cancer it would be one of the common types of thyroid cancer but I like to be different so mine was the very rare medullary thyroid cancer.  Because this type is usually slow growing and not susceptible to the normal chemo treatments, patients are on a 'wait and watch' plan.  Regular blood work to track the existence of calcitonin in the blood and ultrasounds of my neck have been the only things I've done over these years.

Without a thyroid there should be no calcitonin in the blood.  If the first surgery 'cures' the cancer then calcitonin goes to 0.  My doctor told me that while this does happen, it is the exception rather than the rule.  Had they known beforehand that my cancer was medullary they would have taken lymph nodes on that side of my neck during the first surgery but they didn't know.  My first calcitonin post surgery was 26.8 and that number just kind of slowly crept up until a big jump to 116 last summer.

After another biopsy the specialist at Oregon Health Sciences University decided that I needed to have further surgery on the right side of my neck and it was scheduled for September.  Lucky for me  the surgeon is considered one of the 10 top neck surgeons in the country. The surgery went well and 42 lymph nodes were removed with 6 of them positive for cancer.  Because I think I am super woman, I drastically underestimated how long it would take me to totally recover from this.  I don't think I felt 100% normal until around Christmas although I went on a trip to Galapagos Islands, a class reunion trip to Arkansas, Isabella's birthday in Boise, did Thanksgiving and Christmas for the family, and kept up with my church responsibilities fairly well.  I also have had to go to physical therapy to recover full use of my shoulder.  Happy to report that my shoulder is close to normal again.

Now for the good news...my 6 month post surgery calcitonin check showed that it had fallen from that high number of 116 all the way down to 11!  Good news indeed!  To put it in perspective, people with multiple metastasis will have calcitonin numbers up into the 1000s and even higher.  I'm back to wait and watch and won't see the doctor again until November.  That is fine with me.

Leaves Turning and Rain Falling

My surgery went off without a hitch on September 14.  I did stay one night in the hospital but had minimal pain!  One possible side effect of a surgery like mine is the inability to raise your arm so I had visions of trying to teach George how to blow dry and curl my hair on that side!  Luckily that didn't happen!  I rested totally for 2 weeks and then headed to Arkansas for my 45 year class reunion!  It was an absolutely wonderful time and will soon have its own blog post.  I got back to Portland, had two busy days, and then went to Boise for a long weekend.  Another fantastic time seeing the family and watching Scott coach his high school soccer team in the district tournament!  Then I came home and hit rock bottom!  I felt bad enough that I called the doctor.

When the nurse heard the timeline of all I had done since surgery she said,"You are doing too much, too fast.  For the next 5 - 10 days, I want you to sit and watch the leaves turn and the rain fall.  You have permission to be completely lazy. Don't make any 'to-do' lists." How did she figure me out so quickly?

So that is exactly what I did!  I didn't go to Utah for the weekend with George.  I literally sat.  In fact last week my total steps was 8347!  Sad...but it worked and I am feeling close to normal but I am pacing myself.

Several times I have given people advice after surgery and told them that even when they started feeling better then should slow down and not do too much.  I probably should have heeded my own advice!

Cancer Update

Oregon Health Sciences University

I've been lucky the last 3 1/2 years since my diagnosis with Medullary Thyroid Cancer. The only disruption to my life has been regular blood draws and neck ultrasounds.  The blood draws are to check for something called calcitonin.  People without thyroids should have readings of near 0.  My number has been steadily creeping up.  When the number made a big jump in July my doctor ordered a CT scan  and did find something suspicious on the right side of my neck.    A biopsy showed that it was more cancer so tomorrow morning bright and early I'll be having surgery at OHSU to remove the lymph nodes on that side.

Spread to the lymph nodes is pretty much expected with my type of cancer.  In fact, had they know the type of thyroid cancer I had they would have removed them during the first surgery when my thyroid was removed.  My prognosis is still good and we'll be hoping the calcitonin goes to near 0 in the months after surgery.  I feel absolutely normal.  My health is very good except for the cancer!!!!  We just got back from a fantastic 12 day trip through Estonia, Latvia, Lithuania, Belarus and Poland.  Many blog posts planned about that trip!!!

I'm expecting to spend one night in the hospital and then 1 - 2 weeks to recover completely.  I have to be back to near normal by October 1st so I can attend the 45th Class Reunion of the Lonoke High School Class of 1971!  Can't miss that!

Happy 100th!

My Daddy, Jake Gates Montgomery, was born on January 31, 1916!  Today is his birthday!  I never know whether to say 'it was' his birthday or 'it is' his birthday.  Do you celebrate birthdays in heaven?  I think heaven is a place of many joyous celebrations.  It makes me happy to think of my Daddy and Mother having a fun birthday party with all their loved relatives.  I like to think that someday I'll be joining them for the ultimate family reunion!

In honor of this milestone birthday I thought I'd share a few photos of him.

Handsome in his Navy uniform!

 

With little baby Marilyn!  Does anyone else think that Isabella resembles me????

 

Thanksgiving 1954 in the laundry of the USS Antietam.  That is where Daddy worked.  I was 15 months old.

I was 'so glad when Daddy comes home'!

 

In Rome in front of Saint Peters in 1960.  My love of travel and photography started early.   I was 6 years old.

 

This is the last photo of my Daddy.  It is Christmas 1979, just 5 months before he died.  It was taken in my Aunt Mary Finch's house. Aunt Mary is in the front.  With the dark vest is my Aunt Maudie Moore.  And Grandma Finch is in the back. They are all in heaven now and I hope they are all celebrating Daddy's birthday with him today! 

 

 Daddy had already had surgery to remove a tumor near his lip when this photo was taken.  We were in Arkansas for Christmas that year with little 5 month old Mary.  I'm so glad we were. I was 25 when Daddy died.  All four of our children are older than I was when I lost him.   I've lived so many more years without him than with him but I know he had an influence on the woman I am.  In some ways I'm a lot like him.  And I think that is a good thing.

Cancer Update

The specialist that I had been seeing at Oregon Health Sciences University recently moved to Phoenix so today I met with a new doctor.  All is good!  My numbers have not changed significantly so we are still on the 'wait and watch' plan.  No need to see him again for 6 months.  Then I'll have more blood work, a neck ultrasound and a visit with him.  Happy day!

OHSU is quite the busy place!  Besides being a top rate medical facility, they also have a very cool tram from the lower campus to the upper campus. On a clear day, the views of Mt. Hood are stunning.

No News = Good News

I thought I should do a quick cancer update for 2014.  Yes, for me this year "No news was good news'!  My calcitonin number when up a little but not significantly.  Calcitonin is the measure of the spread of my medullary thyroid cancer.  So while I do still have cancer, it is not affecting my life at all except for the occasional blood draw and neck ultrasound.  Both ultrasounds that I have had this year show no cancer. It is there somewhere but still microscopic.  This type of cancer is normally very slow growing so that is good news too.

I feel 100% fine and completely
normal.  May this trend continue for many years is my prayer.  I would appreciate your prayers too!

Happy 2015!  Love life and see good days!

Cancer Update

2013 has been an interesting year health wise.  I've always been so very healthy that this year's cancer diagnosis has been quite a shock.  I have heard it said that thyroid cancer is a 'good cancer'.  I'm not sure that any cancer could be considered 'good'.  I will say that to this point it has had very little affect on my life.  I feel 100% normal with my usual energy.

Because Medullary Thyroid Cancer is so rare the primary directive is to get to a 'Center of Excellence' where they treat many "Meddies", as people with this type of cancer call themselves.  I thought that would mean trips to MD Anderson in Houston or Mayo Clinic in Minnesota or Johns Hopkins in Baltimore. Amazingly a doctor who is considered an expert just moved to Oregon Health Sciences University right here in Portland. I won't have to go anywhere for consultation or treatment.  That is happy news.

I saw her a couple of months ago and really liked her.  While my cancer marker numbers have never gone to 0 (and according to her, won't go to 0) they have stayed quite stable at around 30. Patients with a spread of the disease have counts of into the 10,000 and even higher.  For now all I have to do is to have regular blood work and neck ultrasounds every six months. If the numbers start to rise or something shows up on the ultrasound, then more tests will be warranted. Most likely places where it would spread are the lymph nodes of the neck, the liver, or lungs.  Even if the cancer does rear its ugly head somewhere else, it is normally a slow growing sort. Medullary Thyroid cancer is treated more like a chronic disease than a normal cancer.  So for now we just wait and watch and pray.

One of George's mother's favorite hymns was "Lead Kindly Light".  A phrase from the 1st verse has become my mantra.

Keep thou my feet; I do not ask to see

The distant scene - one step enough for me.

Welcome to the club!!!!

My friend who was recently diagnosed with breast cancer said it well, "Welcome to the club no one wants to be a member of!"  I'm now a member of the "I have cancer club".  It still shocks me to think that thought.  Of course I am sure that each of the 692,000 women who join this club every year and the 745,180 men (2008 stats) feel exactly as I do.  Only 4% of the women have thyroid cancer and only 5% of them have medullary thyroid cancer like I do.  So about 1384 cases like mine are diagnosed each year.  I like to be unique!  I've always felt some pride in my boring medical history; well it is boring no longer!

The surgeon reported that there was no lymph node involvement also that the tumor was small (1.5 cm) and came out very easily.  All that is good news.  So I am stage 1.  According to the stats 5 year survival rate for this type of cancer at this stage is 100%!  So I am lucky.  This morning I had blood work to get a base line of something called calcitonin.  In a couple of months, I'll be tested again and the amount of calcitonin should be going down and should keep going down.  As long as it keeps decreasing I'm great.  If that number goes up then they will have to do more tests.  My doctor says with my generally good health and the stage of the tumor she has every reason to give me an 'excellent prognosis'!

So I'm happy today!  I'm busy planning a fall 60th birthday trip to hopefully see our beloved FC Barcelona play soccer in Barcelona!  And thinking of starting teaching seminary again in a 10 days.  Life is good!

"I like living.  I have sometimes been wilding despairing, acutely miserable, racked with sorrow, but through it all I still know quite certainly that just to be alive is a grand thing." 

Agatha Christie, An Autobiography.

Moments that change things.....

We all have those moments in life when things change; the day you get married or have your children or maybe the first day on a new job.  You know the days that become turning points or markers in life.  For us we talk about the year we 'almost but not quite' moved to Italy and the year we moved to Spain and the year we came back from Spain, the day George got laid off from HP....

Tomorrow just might be another of those days!

Last summer I noticed a little lump on my thyroid.  The doctor thought it warranted a 'fine needle aspiration' and biopsy so in September I had one and the results were negative.  However the doctor wanted to check me again in 6 months and this time she felt that the nodule was bigger so she scheduled another biopsy.  Unfortunately this time the results were 'suspicious' so tomorrow I'm going in for surgery to have at least half of my thyroid removed.  They will take out the right lobe and do another biopsy.  Depending on the results, they might take my whole thyroid.  I've never had surgery before so I'm scared.  I'm scared that today is my last 'cancer free' day; that from now on it will be 'after my cancer diagnosis' and that's how we'll look at time.

Now statistically things are in my favor.  Only a small percentage of thyroid nodules are cancerous and of the ones that are cancer, the huge majority are a type that require no further treatment. So I am probably going to be fine.  I guess I just always thought I'd be like my mother - healthy and active to my late 80's.  My Daddy died at age 63 of cancer.  Scary thought!

This gives a whole new perspective to my Come what may and love it theme!  Still good advice and still the way I'll try to approach things!