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A few weeks ago it was picture time at the daycare where my children attend. Zander and Lilah each had a different assigned day and since they only go part time they were only scheduled to be there one of the two days. The photography company, Lifetouch Portraits, was willing to do sibling photos and take both kids’ photos on the same day. I saw the reminders for it, I placed a reminder in my phone and then I forgot. Nate told me that night that we forgot and I assumed they were not taken at all because I had not signed the permission forms. Today, in the middle of the table I found three packs of school photos. (Nate had signed the permission forms.)
Without remembering that it was picture day, I had actually sent Zander in an outfit I would have possibly picked out for him anyway. It was a dark blue t-shirt with an orange collar and a line drawing of a football player with an adorable pair of plaid shorts that my mom bought him. Lilah, on the other hand, oh dear sweet Lilah, I sent her that day in her baseball shirt or as she calls it in toddlerease, “me base-boll shurt.” She loves this shirt and the second she sees it in her closet she wants to put it on. It is orange, about fours sizes too big, hanging down to her knees and I had paired it with black leggings that are about two sizes too small. The outfit was finished with a scraggly pair of pink, sparkle, Hello Kitty shoes.
But, before I share with you the significance of the base-boll shurt, let us discuss Lilah’s hair. Lilah is in a somewhat challenging hair stage. She is almost three years old and I have never had it cut. She however has cut it TWICE. The last time almost giving herself the bangs I was so diligently avoiding. This makes fighting her to pull her fine, blonde hair back into some sort of a presentable look even more challenging. That morning Nate had done a quite successful job in parting it and putting it back into two hair bands.
Today, when I opened Lilah’s package and saw that was what she was wearing I laughed and then teared up. I, in general, worry way more about what Lilah wears than what I do and thankfully still get a say in the matter. But this shirt, this base-boll shurt, though I never would have done it on purpose was absolutely perfect for school photos. It is a shirt from our local minor league baseball team the Springfield Cardinals. Back in June myself and the majority of my primary support group (my family minus my older brother Jimmy who now lives in Dallas) attended the annual Cancer Survivors Day. With the purchase of a ticket we each got a free meal and a free shirt. On the back of the shirt it says, “Cancer Survivors Day 2014″ and lists all of the sponsors. I sat there looking at this picture of this beautiful soul, with self-cut bangs, in her be-loved over-sized base-boll shirt and thought I carried her for 17 more weeks after I found out I had cancer just dreaming of the day she would be here safely and look at her!
The night of the baseball game I snapped a photo of her walking and running her hand on the fence as she and I walked with Nate, Zander, my parents, my brother Joe and his wife Rachel. Rachel and Joe told us prior to the game that they were expecting their first child and we were all overcome with joy. We walked with hundreds of other cancer survivors and their support teams and it was quite the sight to see. When you see a group of people together knowing that probably just one of them is the cancer survivor you see the impact that cancer has. It did not just profoundly impact my life, but the lives of those who love me as well. As we walked I stared at the sea of orange shirts making its way around the clay track that loops the field wondering what all their stories were and I watched my family as they supported me yet again. I then stared at my Lilah and thought about our story.
Next week Nate, Zander, Lilah and I are driving to Houston, TX for my next follow-up with MD Anderson. I will get labs drawn, have an ultrasound of my neck (with the potential to do a biopsy on the spot if the radiologist sees anything concerning) and meet with my endocrinologist. I am hoping, especially since my most recent antibody level was very low, that this will be an all-clear checkup and we will make it back home without our vehicle breaking down and costing a fortune to fix. One can always hope, right? All joking aside, even though I know this should be a good checkup I have been “what if-ing?” myself into a frenzy. I wish I was someone who could “wait to cross that bridge until we get there”, but alas I cross it a hundred times in my mind before I ever get there. I always have. I always will. But as I am extra emotional and weighing my mind down with likely unnecessary worries, in my house are now portraits of the cutest girl ever, proudly wearing her base-boll shurt, as a perfect reminder to her momma of all there is to be thankful for.
Photo credit to Lifetouch Portrait Studios.
I briefly participated in track as a teenager. I am pretty sure that it was only because they were in need of more participants, not because they were in need of my budding track skills. Fast is an adjective that has never been used to describe me. I participated in the 800 meters. I remember a coach speaking about the strong finish, that last burst of energy used to sprint across the finish line. He told us at the end to give it all we had and demonstrated the perfect sprinting form.
Nate started nursing school in January of 2012. The first semester he just went part time because we knew I was going to be given radioactive iodine to treat my thyroid cancer but did not know when. As it turned out I received that treatment two weeks into his first semester and he had to move out of our house for five days with our 8 week old daughter and 2 ½ year old son. Since the Fall semester of 2012 he has been attending full time. Most of the first year that he was in school I was hypothyroid and exhausted all the time. In his second to last semester I found out my cancer may be coming back and two weeks later he had emergency surgery to remove his gallbladder and appendix. I had a radioactive iodine scan to see if the cancer was coming back that made me a smidge radioactive and this time I moved out of the house. I was told I had to stay away from our children for two days. That scan was negative and we hoped I was in the clear. My lab work continued to change so I had a PET scan over his Christmas break in January of this year, that showed a spot likely to be cancer in my neck. I had my second surgery to remove metastatic thyroid cancer March 4th, in this Nate’s final semester. We then had to make a trip to Houston, TX because this cancer does not respond to the primary treatment for it. Most of you know how that went.
Our routine has been that as soon as I get home from work we would eat and then Nate left to study. On weekends I had the kids by myself most of the weekend while Nate studied. Back when I was recovering from being hypothyroid for radiation I had to greatly depend on my parents and brothers to help me with the kids while Nate worked and went to school.
Nate graduates today and I can hardly believe that we made it. I had to at times push him, well really shove him through and I know he had friends that were vital in him completing this very tough program. But at the end he sprinted to the finish in perfect form with his best grades to date in this last semester. A couple times this past week I had a full-on melt down. I just completely lost it. On Sunday I could not even function until mid-afternoon. The night before his final the kids were in bed, but they would not stop screaming and calling out to me. I tapped out. I told Nate, who was studying in the room next to theirs, “I am going to the back and I do not have the monitor on, I can not take it any more just so you know.”
I started thinking about the strong finish and it occurred to me that I am not a strong finisher. I am great out of the gate, I am an excellent cheerleader for my team and I will consistently tell myself I can do it, but the finish is not likely to be pretty. I started imagining finishing an endurance race as my support team watches with apprehension and is holding one of those flimsy looking aluminum blankets that does not seem as if it could warm up a sheep. The announcers would likely be heard saying something like, “She was strong at the beginning and really held her own in the hills, but wow she is just collapsing here at the end. Unfortunately this will just add to her growing reputation of being a poor finisher.”
In my 20’s if I knew this about myself I would have been ashamed of it and not admitted it to anyone. In my 30’s I would have been in quiet acceptance. But my favorite thing about my 40’s is that I can now shout my weaknesses from the rooftops and not be ashamed, “My name is Janna Jones and I am poor finisher, but I will finish.”
He did it and we did it as a family. We set this goal for Nate and for our family so that we could better our future. My husband is going to be an amazing emergency nurse and I am so proud of him. I cannot believe it is over. I am so immensely proud of him and us. WE DID IT!!
In early December 2011, several days after I gave birth to Lilah, I sat one afternoon holding her and sobbing while sitting on the loveseat in our bedroom. At the time I was trying to breast feed at least until my surgery, to remove my thyroid cancer, which was scheduled for 13 days after she was born and possibly until radiation which was unknown at that time when and if that would take place. I could not get Lilah to latch on and the breast pump we had rented was not working. My husband, Nate, found me in my hysterical mess and left quickly to get the extra part for the breast pump that was needed. Shortly after Nate left my mom and Zander (2 1/2 at the time) came back to find me sobbing. I told Mom what was going on, which was that I was hormonal and overwhelmed. I was trying to do the right thing for my baby in the short time that I was able to breastfeed and nothing seemed to be going my way. (I also had a headache that began shortly after her birth and had not yet realized that it was a spinal headache from the epidural.) Mom listened to me and then said, “I am just going to sit with you, I remember my mom just sitting with me.” She slid in next to me on the loveseat and just sat there. Exactly what I needed.
Today is the first Mother’s Day that my mom has lived without her mom, who passed last August. This memory came to me today of my mom just sitting with me at a moment when the reality of what I was up against was truly setting in. I had a newborn baby at home and was about to undergo a major surgery to remove cancer from my neck. I was thinking today about how my mom chose her action based on what her mother would have done. I then began to think about how so much of motherhood is about the legacy. It is not just about the here and now, but what will transpire much later down the proverbial road because of the choices made in the here and now.
I am so thankful for my mother, her mother and the long line of mother’s before them. I am thankful that my mom is kind and soft spoken and sometimes sorry that my kids do not have a softer speaking mother. I am thankful for her strength that she has showed me so many times but especially in the last few years since my cancer diagnosis. I am thankful that she loves to just sit and listen to me and my brothers and loves to laugh with us. I am thankful that she shows love through her actions of cooking, hugging and helping. I am thankful that she accepts me and all my challenging flaws, but mostly when she looks at me she just sees my strengths. I know she is missing her mom today and I am too. Grandma lived an amazing life and left us a beautiful legacy.
Thank you to all moms and all of you who take on a mothering roll, for all you do in the lives of the children that need you. Today, I am holding close in my heart those of you who are missing your mother or grandmother, those of you who are missing a child that was or could have been and those of you who know the pain of infertility.
A little while ago I had a battle of the wills with Lilah. She climbed up on the bed next to me where I was working on this blog and started hitting my computer keys. I told her no and she kept doing it so I told her she had to get down. I then put her down on the ground, she climbed up on the bed and resumed hitting my computer. I put her on the ground, she climbed back up and did it again. I thought for a moment about closing my computer and giving her the attention that she was seeking. I then thought of an afternoon that Mom, Zander, Lilah and I were eating lunch at a restaurant. Lilah (2o months at the time) was throwing her french fries on the floor and then reaching for more. Mom told her no and that she could not have any more fries if she threw them. I snapped the photo below right as their eyes and wills met. It is a priceless photo to me. Today I practiced my mom’s legacy until Lilah sat next to me quietly without hitting my computer.
A little while ago I walked out of my kids’ room for the fourth time tonight after a trip for water, reassuring my son that a goat is not going to eat his favorite blanket and locating a lost teddy bear. Both my kids usually wear jammies to bed. However tonight Zander, age 4, went to bed wearing only underwear and Lilah, age 2, wearing a long flowing skirt and a shirt with a bunny on it. I pick my battles. I walked through my house and saw popcorn scattered lightly in the living room floor, because after 6:30 pm I am not really that great of a parent. Our tub is full of bleach water and toys thanks to a little blonde girl pooping in it. My kitchen is not getting cleaned tonight and the counter is covered with dishes and with paperwork from daycare. The master bathroom floor is splattered with water from the fight to get the little tub-pooping-shower-hater clean. But, miraculously I had the forethought to make my bed this morning and it is now my haven. Why is it so much nicer to climb into a made bed?
I have been a wimp. I have thought many times about how to follow-up my blog of great complaint, but had not been able to come up with anything clever or meaningful to write or maybe I just did not want to do it, in pure wimp fashion. The week following my trip to Houston I exchanged emails with my local endocrinologist to fill him in on what the endocrinologist at MD Anderson said. The first two emails were as follows:
I went to MD Anderson last week and met with… She told me that she thought the cancer that was just removed was residual from the first surgery not recurrent and she just recommended ultrasounds every 6 months. She does feel that it is not iodine avid and said she would not treat me with radioactive iodine again. She did an ultrasound of my neck and a CT with contrast of my neck and chest. I don’t have the CT results yet. I don’t understand why she accepted my case if she was just going to recommend monitoring me. It seems that could have been done over the phone.
I would like to continue doing my follow-up with you and whatever you think is necessary.
Thanks for your time, Janna
I don’t have anything more than I-131 iodine to give you.
When it gets worse, this (meaning MD Anderson) or Mayo is the place you need to be for the next step in therapy.
Note that I added the underline above, because that line sunk like a ton of bricks in my gut. I probably even cried a little, but I cry a lot, so that does not always say much. I emailed him again and he and I worked out that he would see me in 4-5 months and check my tumor marker, antibodies and other lab work. He said he would not do an ultrasound. So the plan for now is that I will see him in September and I have an appointment to go back to Houston in October. If my antibody levels are undetectable in September I may choose not to go back to Houston at that time.
The next day I got my return phone call from the endocrinologist I saw in Texas. She was again very nice and went through all of my test results. Incidentally she discovered that I was critically low on Vitamin D and wrote me a prescription dose. I actually feel much better since that has been corrected which is really nice. The low Vitamin D level is likely due to me having to stay hyperthyroid. Seriously, thyroid hormones mess with EVERYTHING.
My ultrasound and my CT scan looked as expected a month after surgery and the rest of my lab work was good. I am appropriately hyperthyroid. The most poignant part of the conversation was that as were we talking I asked for clarification on the information she was sharing with me. I asked, “So are you saying that just because this cancer is no longer iodine avid, it does not mean that it is aggressive?” Her answer was yes, which was such a relief because I did not previously understand that. I also asked her if it was okay with her if I pushed back my October appointment if my antibodies were negative in September and she said yes. So for now I have a plan. I do best when I have a plan, well a plan and information.
The following week Nate had a CT to re-check a lung nodule that was incidentally found back before his surgery to remove his appendix and gallbladder last October, a pipe in our basement burst and flooded it and the kids and I came down with a stomach bug. To date one of the most surprisingly challenging things about my cancer experience has been that life does not stop, whatever crisis or challenge is going on the silly, mundane, frustrating, financially difficult things still happen but each time I am surprised. Each time, I think I should finally be cut a break. Nate’s CT was thankfully fine, no change to the small nodule so it is not of any more concern. (I do get cut some breaks, I just sometimes fail to see them.)
I am starting a new job at my hospital’s urgent care on May 28th because I just could not adjust to working five days per week. I felt like I was missing out on time with the kids and that all I did on the weekends was clean my house and do laundry to get ready for the next week. I am hoping with both Nate and I working 12 hour shifts and him not being in school that we will have a lot more time together as a family.
I have less than a week of being a pseudo-single parent. Nate’s last exam is May 13th and he graduates from his nursing program May 16th. He posted a picture of his cap and gown, still in the package, on Facebook this week and I cried. Can you imagine what I will be like at his graduation? A couple of months ago a moment of maturity hit me, that moment where I realized that from this point forward the accomplishments I will be most proud of will be the accomplishments of others. I have graduated college with a degree in nursing, but May 16th I will be way more proud of my husband than I could have ever dreamed of being of myself. Nate was working on prerequisites for this program when I met him in 2008. Three weeks after my cancer diagnosis, in August of 2011, he received his acceptance letter. After 2 1/2 very trying and life changing years, he is almost there. We are almost there.
Friends are one of God’s greatest gifts in my opinion, which has been my opinion for most of my life. I love people and I love my friends. When true friendships are made and bonds are formed, years can go by even 10 or 20 without seeing those friends and you can pick up where you left off. Lately I have been amazed by the quality of the people in my life that are both new and those that have been around for a long time. (Sorry, I just couldn’t call them old.)
I am back from my trip to MD Anderson to be assessed for my non-iodine avid papillary thyroid cancer and well, I am frustrated. My husband and I drove all the way down there to be told that the recommendation was that I be monitored with neck ultrasounds every six months, there is a bright idea – monitor a cancer patient. The doctor said that it was her opinion that the cancer that was just removed was residual cancer from the first occurrence not a recurrence (I don’t agree with the reasoning that brought her to this conclusion). She agrees with my doctor that it is not iodine avid (radioactive iodine is the primary treatment after surgery), but feels that close surveillance is adequate. So you may be wondering why I am frustrated. It is good news that I don’t need treatment right? It is good news, I am thankful for and I agree that currently the benefits of external beam radiation, which would be about the only choice for treatment, do not outweigh the risks. However, I do not think it was necessary for me to drive 12 hours away to be told something that could have been told to me over the phone. Additionally, if this cancer has been there since before my first surgery I have had 3 ultrasounds in that time and not one of them caught it. Those ultrasounds were performed by the MD who is managing my care. So, I personally do not think that monitoring every six months with ultrasounds when I no longer respond to our primary treatment for this kind of cancer, therefore making early detection extremely critical, is adequate. I am actually more than frustrated, I am mad.
So now let us step away from me being mad that I had to make this trip to be told something that I could have been told over the phone to focus on something that makes me angry. My appointments were Wednesday and Thursday. Our plan was to drive from Houston to Dallas on Friday. Friday, our 2003 Chevy Trailblazer, that we just purchased last November, broke down. We took it to a Firestone Friday and after receiving the run-around Friday afternoon and all of Saturday we finally got our truck back Saturday evening. They charged us more than we paid for it and more than its value to repair it. They were closing at 6:00 pm, it was after 5:30, they were closed on Sunday and I had to work on Monday. We were officially between a rock and a hard place. The decision was made to pay it and try and get headed back to Missouri that night. After Nate picked me and our things up from our lovely friends’ home we headed out of town. Following stopping for dinner we got out of the north Houston area at 8:00 pm. I then began looking for hotels in the Dallas area. We found one on our route that we could use our IHG reward points on and booked it. We arrived at that hotel at 11:30 pm only to be told that they did not have a room for us and they did not understand why the website let us book it! That’s right; they did not have a room for us! I looked at Nate with exhausted tears streaming down my face and asked, “Do you just want to go home?” Six and a half hours later we were home at 6 am Sunday.
Yesterday we were able to dispute some of the charges from the Firestone with our credit card. They double charged us for labor. Discover credited us a substantial amount and is taking the dispute up with that independent Firestone dealer. I am still upset over having to make the trip for the information that I gained at MD Anderson. I am also upset because they told me they were available for me at any time (business hours of course) yet I have not received a return phone call for a message I left last Thursday. Additionally, I waved having an in person meeting with my physician on Friday to receive my CT results because she said she would call me and I have yet to receive that phone call as well. It is upsetting to make such effort to go to a world-renown cancer center and receive this kind of service.
Friends, I love friends. Friends are awesome. Friends are a gift. I have an abundance of friends and I am so thankful for every one of them. With all the unfortunate parts of our trip covered let us land on the happy note. Prior to leaving for this trip we were so generously given to by friends and family and offered hotel and home stays by friends that our entire trip (minus the truck repairs) was paid for. The entire trip was paid for. I do not even know how to properly respond to that. That is generosity that has so touched Nate and me after we have worked very hard to get him through school to provide better for our family and to get me healthy. Each of you knows who you are and we sincerely thank you.
Additionally we had a wonderful time catching up with college friends of mine, some that I had not seen in 20 or more years. I was in Rhonda and Bryan’s wedding 20 plus years ago. My dad officiated their wedding, my mom catered it and my little brother was the ring bearer. We stayed with them the first night we were in Houston. I had not seen Rhonda and Bryan since the late 90’s yet it really was as if no time had passed. We had a fantastic visit with them and their three sons. I loved seeing them.
Thursday afternoon we were able to pop in on Julie and Royden and their son Spencer. Julie and I were neighbors as children. We had a lovely visit over a couple of hours with them before making our way over to stay with Sherry and Ryan . I also know Sherry and Ryan from college where I received my first bachelors. Additionally, they welcomed my childhood friend Kristie, she went to college with us as well, into their home. Kristie drove over from Austin just to see me. We had the best time laughing and catching up. Sherry and Ryan are the parents to triplet 6-year-old daughters and a 21 month old daughter. They were a pure delight and were all crazy about Nate. He has a way with the ladies, I cannot deny this. Sherry and Ryan welcomed us back into their home Friday night when our plans to leave were thwarted by our automobile issues. What a blessing that was to have broken down so close to their home.
I have always considered myself a bit of a Pollyanna. I like being positive and I like the silver lining. I have been so aggravated over what I consider a medically pointless trip to MD Anderson and the subsequent pummeling that we received from a dishonest mechanic. I have been angry and I have been tearful. I am so thankful for the welcoming we received from these long-time friends of mine especially because they were the very bright spot in this disappointing trip. I am especially thankful that my best friend was by my side through this ordeal, I do not know what I would do without him.
Sunday, March 23rd around 7:30 pm my phone rang twice, I attempted to answer it and no one was there. The phone call came from area code 713 which is Houston, TX so I knew it was MD Anderson. I had been waiting to hear from them since my endocrinologist placed the referral on March 12th. I waited a few minutes and then impatiently dialed the phone number. After a brief conversation with a lady on the other end of the line I learned that my case had been accepted by MD Anderson Cancer Center and that the doctor ordered it for first available appointment. She told me that there was an opening for April 2nd and then said she would call me the next day to confirm. It was Sunday evening and she seemingly did not have much of an interest in staying on the phone with me.
After that concise conversation I filled Nate in, text the update to my family and a few friends and then vomited. Secretly I had hoped that MD Anderson would turn my case down and that my endocrinologist was overreacting. I knew that would not be the case, because he is a very good doctor and the facts about my case are what they are, but still I hoped and when the reality sunk in, my weak gut took a hit.
The next evening I called the same lady after waiting for her to return my call until 7:30 pm. Again she did not seem to want to stay on the phone with me or make any commitments, she made similar promises to call again the next day and to look up the same information she had already failed to look up for me. I managed to ask her again what the available appointments were. She told me April 2nd and April 21st. I knew I did not want to wait until April 21st, so I asked her to put me down for April 2nd.
Earlier that evening I posted the following picture of me on Facebook with a caption that said, “Saw this shirt in the gift shop at the Hulston Cancer Center where I work. Today I needed it. Heard from MD Anderson yesterday, may be making the trip to Houston as soon as next week. I will have to be there 3 business days so Nate won’t be able to go with me. As always we will figure it out.”
That night I had no idea how we were going to do this and I was starting to panic over Nate not being able to go with me. I kept telling him and myself that I would be fine even if I had to go by myself, though that was not likely as a line of beautiful friends was forming to go with me. I am a processor. I have no problem asking questions I have thought of prior to my medical appointments but on the spot I do not come up with questions very easily. I need to process the information first. Nate is my on the spot guy. If he could not go, who was going to be my on the spot guy (or girl)?
Over the years I have heard the phrase, “God is in the details.” I honestly did not understand what this phrase means. I had come to the conclusion that it was meant as coercion to get me to clean my baseboards and dust behind my TV as a show of faith. Well, I am not that easy of a target and I hate dusting. Twenty four hours from posting the above photo and caption on Facebook most of the details for my trip had fallen into place including the most important detail in that we received permission from Nate’s nursing school for him to miss school and clinical time to come with me. For the first time I understood what “God is in the details” means.
The plan as it stands now is that Nate will take an exam Tuesday morning and then we will drive to Buffalo, TX and stay the night in a hotel. On Wednesday, April 2nd I have appointments at MD Anderson at 11:30 am, 1:00 pm and 2:30 pm. That night we will stay with a couple whose wedding I was in more than twenty years ago and that my dad officiated. On Thursday I have a neck CT and a neck ultrasound and that night I will stay with another couple I know from college and another friend will hopefully come over from Austin to see me. On Friday they should have the recommendation for treatment put together for me. That night we will drive back to Dallas to see my brother and hopefully some other family and the following day we will make the rest of the trip home.
A trip like this means leaving the kids at home. It just wouldn’t be feasible for us to take them with us unless we had someone to watch them during my medical appointments, but additionally it would probably just add stress to an already potentially stressful situation. We will be gone for most of five days. I thought to myself, “Have I ever been away from my kids for five days?” A few seconds later the answer arrived, yes I had, two years ago when I was radioactive. Over the years I have had conversations with parents about leaving their children for vacations or work trips. I know several who will not leave their children no matter what the circumstance. I have not had that option. Thankfully, the adjustment for me has been manageable because my parents were always willing to leave us for vacations or business trips. It raised me to believe that it was okay. I am really thankful for that because it gives me the ability to not just be stuck in the moment of, “I have to be away from my kids.”
Additionally, over the last several years I have only been able to use my paid time off from work for medical leaves including giving birth to both children, a procedure for the pregnancy I lost and four surgeries, including the two for my thyroid cancer. Here or there I have taken a day or two off, but I have not taken time off for a true vacation. Next week, I have to go to Houston, TX to get expert opinion of how to keep this cancer gone. I have to leave my children for five days and take four days off work, again for a medical reason. I am left with another choice on this road of mine. I can feel sorry for myself or I can see this as an opportunity to be with my husband for five days sans the children, catch up with some old friends and family and just call it a vacation. I am sure you know what my choice is and I hope that you will look for opportunities in your life to see things from a different perspective. Life is hard. Life is also good.
I sat at home last night, still recovering from my surgery and trying to catch up on some TV watching. Nate was home studying and our kids were with my parents. I had to make a little trip to the ER yesterday because my neck was swollen, red and warm. It had been a little swollen the day prior but it seemed to increase quite a bit over night and that worried us. Following my first surgery for this cancer I developed a pretty significant post-op infection and was admitted back to the hospital for two days of IV antibiotics. I learned my lesson from last time and listened to the requests of my mom and husband to get it examined earlier this time. Thankfully, after a relatively quick trip to the ER where I was cared for by a ER physician I adore and staff I love, I was allowed to come back home on oral antibiotics and strict instructions to return if it worsened.
I have not written an update since surgery, up to this point, because it has been hectic and I’ve had a hard time getting my mind around it. My moment of clarity came last night in a line from one of my favorite TV shows: NCIS. I have written in the past about how I believe God speaks to us through a variety of ways. The line that touched my soul was delivered by Mark Harmon’s character Leroy Jethro Gibbs in a true Gibbs’ style pep talk to one of his team members, “Anticipation doesn’t get you the win, it’s how you react to the situation.” The surgeon thought going in that it would be one small lymph node that had a speck of cancer in it. Treatment post surgery was not discussed at any length because it was not expected to be necessary. Not to be a pessimist, but my track record with this cancer is that it does not go how it is supposed to with thyroid cancer, you know the easy one, the cancer to get.
Prior to surgery I feared three things: that I would come out with a drain, the cancer would be more advanced than anticipated and that my right vocal cord would be paralyzed. What the surgeon found upon opening my neck back up was a larger than expected mass that was also deeper than expected. The nerve to my right vocal cord ran through scar tissue directly over the mass and made resection of the mass a challenge. Good news is my brilliant surgeon with the use of a wicked cool nerve monitoring system was able to not damage that nerve and thus preserve my voice. He did what he termed a limited dissection and removed more than he thought he would have to prior to the surgery including the mass, adipose tissue and a string of lymph nodes. The more extensive surgery required a drain to be placed.
Anticipation doesn’t get you the win, it’s how you react to the situation.
Post-surgery my husband and my mom were informed by my surgeon that the mass was larger than expected and that just by what the surgeon saw he would be recommending radiation again (radioactive iodine). I woke in the post-anesthesia care unit (PACU) looking immediately to see if I had a drain and I did. I am pretty sure that in my drug induced state I kept going on and on about the drain. I am sure I was trying to be funny, but I wonder how annoying I may have been. My surgeon came to see me and told me about the size of the mass and that it was not right next to my trachea as it appeared on my scans but was much deeper, almost on my spine. He explained that this made it trickier and required him to take more tissue than originally planned.
My surgery was planned to be outpatient and thankfully that did not change. It was in the same-day surgery unit, where I was to be recovered to the point that I would be allowed to go home, that I was reunited with Nate. Nate filled me in on the additional details that the surgeon had divulged to him and my mom and the reality that this was worse than hoped took it’s place in my heart.
Anticipation doesn’t get you the win, it’s how you react to the situation.
I have once again been surrounded with an unbelievable amount of love and support. My children have been cared for, my laundry has been done, meals have been made and purchased, my house has been cleaned, prayers have been said and over and over I have been reminded that I am loved.
The pain returned that was there with the first surgery and the weird phenomena of not having enough strength in my neck to lift my head. Granted mine is a super-sized Kissee head, but still it is bizarre to not have enough strength in my neck to lift my head. I hate that feeling and I hoped that this surgery would be much easier to recover from than the last, and while it has been that deep pain was still there. Thankfully it did not seem to last as long.
Anticipation doesn’t get you the win, it’s how you react to the situation.
In the day following my surgery I reached out, via the patient portal system designed for communication between providers and patients, to my endocrinologist. Prior to surgery our plan was that he would see me two months after my surgery. He wanted to give the anti-thyroglobulin antibodies that were elevated prior to surgery and opportunity to go back down. He would be the one to order the radioactive iodine (Iodine-131) again so I assumed he would need to see me sooner than two months. I messaged him asking him what the plan for me would be.
While waiting to hear from my endocrinologist my pathology report came back. My surgeon called me Thursday, two days post-op, to tell me that of the eleven lymph nodes that were taken two were positive for metastatic papillary thyroid carcinoma. The largest of the two was 2.1 cm and there was something called extranodal extension which means the cancer extended beyond the lymph node. My surgeon was fairly up beat and I fed off of that. He said that he did still recommend radiation and that I would be just fine.
There has been a question hanging in the air, or more like the elephant in the room, about whether my cancer remains iodine avid. Papillary thyroid cancer, as I understand it, is very treatable but sometimes it changes and stops taking up iodine. Our primary and very successful way of treating papillary thyroid cancer is with surgery followed up by a dose of iodine with radioactive material hidden in it, Iodine-131. Papillary thyroid cancer that no longer takes up iodine is more difficult to treat. Back in November I had a radioactive iodine whole body scan that was negative. Our hope has been that this cancer was too small to show up on the scan. Now that I have had my surgery and the largest mass was 2.1 cm the worry has become that it should have shown up on the scan and does this mean that my cancer is no longer taking up the iodine, no longer iodine avid. I addressed this with my surgeon and he said that he did not know, but he would still treat me with the Iodine-131. As I am one to do, I jumped on the happy train and hoped this meant that things were better than we feared immediately after surgery. Nate was still very concerned.
Anticipation doesn’t get you the win, it’s how you react to the situation.
Friday morning reality came in the form of a portal message from my endocrinologist. To sum it up he feels that this cancer is no longer iodine avid and that giving me the Iodine-131 again will increase the side effects but not treat the cancer. There is a lifetime dose limit that a person can have of Iodine-131 before running the risk of developing leukemia or other bone marrow issues. Additionally, the Iodine-131 can damage the salivary glands which I have already had some issues with after just one large dose of the radioactive iodine. His recommendation is that I consider going to Mayo Clinic or MD Anderson where they are doing the research on thyroid cancer that is no longer iodine avid. That hit me like a ton of bricks. Even though this road has been such a challenge for me from the beginning, I have held on to “it’s just thyroid cancer.”
The cool thing about a life filled with beautiful people is that when you are knocked over and surprised by something like this there is a whole group of people in your corner essentially waiting for you to catch on that this is the necessary next step. The people I have shared this with up to this point, with my Nate leading the way, have honestly been relieved that my trusted physician has suggested that I get additional help. While I was in the ER for my little infection I at one point sat in the room with the doctor who was treating me and another who stopped in to check on me. I would call both of them friends. I shared with them that when I received the message from endocrinologist I was bummed. One physician quickly responded, “Be bummed, but go, you go.” A response that was quickly seconded by the other physician.
Anticipation doesn’t get you the win, it’s how you react to the situation.
Before I leave you feeling that this is a sad situation let me remind you and me about all that there is to be thankful for:
- I had another very successful surgery by a very skilled surgeon.
- Even though we were told that we could just watch this my surgeon and endocrinologist felt surgery sooner rather than later was the right thing to do and when I waffled out of fear of a second surgery Nate and many others reinforced that it needed to be done now.
- Only 2 out of 11 lymph nodes were positive for cancer and they are no longer in my body.
- My endocrinologist diligently followed the bread crumb trail left by the elevated antibodies and did not give up when the first scan came back negative.
- My voice was once again spared.
- Love and good will abounds out there for each of us, our job is to let it happen and pass it on.
- The cancer was there again, but now it is gone and I have been given an opportunity to figure out how to keep it gone.
I do not know what the next step is exactly. I have asked a work colleague in cancer research to do some research for me and I am waiting to hear back from my endocrinologist. There is a general agreement that it is time to get help at a larger cancer center heavily involved in thyroid cancer research. I was so hoping that we were going to go in and get this little cancer and that it would be over for good. While there are still many good things on my side, it is officially time to pull out the big guns. I am looking for the win so it is time to react to this situation as it is newly laid out before me and react I will. I love you all and thank you so much for the prayers and support you have given to this point and will give me in the future.