Latest Event Updates
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.
This morning I woke up missing Grandma Pyle. My heart ached wanting to hear her voice. I did not sleep well last night due mostly to a lovely cold that has settled in and made uncomfortable night time mouth breathing a necessity. Tomorrow morning is my surgery that I have dreaded and longed to get past. The night prior to my original thyroid cancer surgery my grandma called me to ask specifically when I would be in surgery so that she could be praying for me, she was 98 at the time and hearing her voice gave me so much peace that night.
This past week has well quite frankly been utterly typical for my life. Nate and I both have been working hard to get things in order prior to my surgery to minimize stress, while Nate is of course still in school. Nate, Lilah and Zander were all diagnosed with strep throat in the past week and Lilah subsequently had diarrhea from the antibiotics. I have been taken over by a lovely winter cold and Springfield has another ice storm.
Sunday morning around 10 am you could have found me laughing hysterically over my washing machine. Nate was at work and the children and I had been up since 6:00 am. In that time Lilah had changed outfits at least three times and was naked again, we had eaten breakfast, made some crafts and watched some TV. Just prior to my fits of laughter I heard a commotion in the bathroom and went in to find Lilah attempting to empty her little potty basin into the real toilet while spilling urine all over the bathroom. I cleaned it up, kicked them both out of the bathroom and went back to my laundry. It was at that time that I thought, am I really having cancer surgery #2 on Tuesday with all 3 members of my immediate family recovering from strep, me beginning to get sick, pure chaos engulfing my house and another stupid ice storm keeping me from leaving? The only thing there was to do was laugh so there I stood over the washing machine deeply belly laughing.
Tonight I am exhausted from not sleeping well last night and yet nerves and a busy mind have me writing instead of sleeping. I thought about my grandma off and on all day today. My Facebook wall is covered in kind words of support and my phone has not stopped buzzing with people telling me I can do this. Over the past few weeks my family has gone over and beyond in their efforts to share their love and support for me. I am blessed.
Just a little bit ago right as I was in the bathroom getting ready for bed I looked at my phone. I had two new Facebook messages. One was a perfectly simple, “I love you” from Nate (from the other side of the house) and the other was a sweet note of prayer and support from a lifetime best friend, Kristie. I stood right there in my bathroom, with tears welling in my eyes and thought, she showed up. Grandma Pyle showed up in every one of you that is out there caring about me tonight, she showed up. Thank you for everything. WE are almost there.
I decided tonight that it was time to put my “No One Fights Alone” cancer bracelet back on. I wore it for almost two months solid during the first half of my cancer recurrence scare. After my whole body scan came back negative I took it off. When I was told that I needed to have a PET scan I just could not put it back on. I could not admit that I was going down that road again.
I am less than a week out from my surgery and officially in the toddler stage of my coping. It consists of me stomping and screaming, “I don’t want to, I don’t want to, I don’t want to” at the mere mention of surgery. You know what, I do not want to do it. It is the right thing to do and I plan to go through with it, but today on my 41st birthday (I’m typing this at midnight) when I meet with the anesthesiologist for my pre-op appointment there will be a discussion about how quickly I can get pre-surgery sedation. I don’t want to do it. I don’t want to wake up and not be able to speak, I don’t want to wake up and find out the cancer is looking more aggressive than expected, and I don’t want to feel like I don’t have the strength to hold up my own head. I just don’t want to! I realize that I am over-reacting because my voice should be intact this time upon waking and the surgeon seems very confident that the cancer is slow-growing THIS TIME. But bad memories, are bad memories and mine haunt me a little.
There is a song I have been listening to lately called Wake Me Up. It has a contagious dance beat and its likeable chorus says, “Wake me up when it’s all over, when I’m wiser and I’m older, all this time I was finding myself and I didn’t know I was lost.” I feel that way about my cancer journey, “I was finding myself and I didn’t know I was lost.” I have danced to this a few times recently, closed my eyes and wished that someone could wake me up when this is over. One of the most brilliant things that God did adding children to our lives is forcing adults who live too often in the past and the future to live in the present. If I wished even this little bit of time away between now and say until I was fully recovered from surgery I could miss Lilah’s four word sentences turning into five words or Zander learning to write his name. I could miss too many bear hugs and wet kisses.
Last night I had a mini-breakdown on my friend Tina and she reminded me that I had to go through with the surgery and then told me that it was time to put my “big girl panties on.” If you don’t know me personally, you’ve seen pictures of me and well I only wear big girl panties. But the panties she speaks of are philosophical ones. (Yes, I just found a way to put philosophical and panties in the same sentence.) She was telling me to suck it up and cope.
So because I love my husband, my kids, my parents, my siblings, my in-laws, my extended family and my friends and because I would like to kick this stupid little cancer to the curb once and for all, I am putting back on my bracelet. In doing that I am admitting to myself that this is really going to happen and walking into my 42nd year with my big girl panties on.
I feel like I have broken a contract. The contract I had with all of you since I chose to openly share my cancer journey and you all chose to openly support me. Just know that I did not do it out of a lack of respect or appreciation for you, but rather because at the time it was the best I could do and I needed to know more before I could share this time.
In late December my endocrinologist re-checked my thyroid related labs. What we found was that I was very hyperthyroid, which is desired to keep the cancer from coming back but not all that pleasant of a living experience for me. I’ll spare you the details of the physical challenges as well as the mental ones. We also found that those stupid, stupid antithyroglobulin antibodies had elevated even more. I had an appointment with my endocrinologist on December 31st where he expressed his disappointment and frustration that these antibodies had continued to increase and told me he thought I needed a PET scan. This meant that even with the negative iodine whole body scan, back in November, that my cancer could still be trying to come back. I knew my antibodies were more elevated prior to going into that appointment and did my research to try to understand what that could mean ahead of time. I showed up to that appointment on New Year’s Eve with multiple medical journal articles about the significance of elevated antithyr0globulin antibodies in differentiated thyroid cancer patients who had a negative whole body scan, highlighted. I am admittedly the patient some doctors have nightmares about. Knowledge gives me peace and after more than two years of being the patient often on the wrong side of the statistics, that is just how I roll. Even with my research that specifically said that a PET is valuable in cases like mine, when my doctor ordered the PET scan my fears were validated and a whole new roller coaster began for me.
I was fine through a very lovely, fun and casual New Year’s Eve celebrated by the four of us, my brother, Joe, and his wife, Rachel, at their home. We had so much fun and while this new development in my health was on my mind I did not feel like I was obsessing over it. On January 2nd I was at my new job in cancer research that is very difficult and that I am very much still learning. That day I thought I made a mistake, which it turned out I did not, however the fear of making that mistake gave room for my other fears to come to the surface. I started crying. I cried for most of Thursday, a good portion of Friday, yes while again at work, and off and on throughout Saturday. I did not expect to feel or react that way and I was surprised by it. However, I quickly realized that I was just not prepared to be going through another cancer “scare” so close in time to my previous one. I had used up the majority of my coping skills and they were not yet replenished. Additionally, keep in mind that I have been hyperthyroid through all of this which also impacts emotions and mental processes.
The PET Scan
Thankfully the wait for this scan was not as long as for the iodine whole body scan because there is no special diet needed. My scan was scheduled for Monday, January 13th and after both my first string, Nate, and back-up support, Jeani, were taken down by winter illnesses I walked into the imaging center by myself armed with my Kindle and my phone full of well wishes. After a quick urine test to confirm that I was in fact not pregnant, my IV being started and blood sugar tested I was escorted back to Quiet Room B. This is where I learned that I would not have been allowed to have anyone with me any way. The way a PET scan works is that sugar with a radioactive tracer is injected into your body because cancer cells reproduce faster and therefore take up sugar more readily than other cells. The same girl who helped me with my radioactive iodine scan walked into the room, explained the process of me needing to stay still for 45 minutes so that my muscles did not take up the tracer and left to prepare the tracer while I keyed up my Snow Patrol Pandora station on my Kindle Fire. The same one that Nate gave to me over two years ago as a special gift of distraction as I was preparing to give birth to Lilah and then two weeks later be hospitalized for my thyroid cancer surgery.
The nice young lady came back in carrying a little tungsten treasure chest that contained a tungsten syringe, quickly injected the sugar containing tracer, took out my IV, told me to relax and left. I sat there, in the quite comfortable recliner and marveled at how it at this point in my weird life was not entirely uncommon for someone in a white coat holding some sort of tungsten container to offer me the contents of said container either via a pill or injection.
I closed my eyes and decided to be excited about this unexpected nap time and did my best to lay as still as possible. After about six songs, it came on, a song I’ve never heard on this particular Pandora station, that is a significant source of comfort for me and one that I have even previously written about before in Mile 22 and Beyond. Jimmy Eat World’s The Middle played with lyrics as follows that have never been more pertinent for me, “It just takes some time, little girl you’re in the middle of the ride. Everything (everything) will be just fine, everything (everything) will be alright (alright).” Tears rolled down my cheeks and a feeling that I was truly being told that everything would really be alright came over me.
After the scan was complete my least favorite part of medical testing commenced, the waiting for results. I was better after the scan than before, but I was still a hot mess with tears and emotional outbursts continuing to occur with more frequency than preferred. It feels as if with each time that I have had to wait on a major result I get worse at it, more impatient and more anxious. I would have thought before experiencing it myself that with each time a person would grow more accustomed to it and maybe develop more coping skills. But at least for me, I have found with each time waiting I bring the previous experiences and memories with me and with the weight of those I cope less well.
Thursday, January 16th at 8:45 pm after giving up that my doctor would call me with my scan results that night, he called. He had told me that he did not mind if I looked at the scan report prior to him calling me and this time I could not wait. With previous scans I waited on him out of fear I would not know what something meant and would interpret it in a bad way. Not waiting on him actually backfired on me in the reverse. When he called I was expecting him to tell me I had a benign condition that the radiologist suggested, but he in fact said that was not possible with my history and lab values. I was taken off guard as he told me that the spot that lit up brightly on the scan was definitely what was causing my antibodies to elevate and though he would not come out and say it, that it was cancer. What he would say and did say a couple of times is, if this is cancer we have caught it very early. He continued on to explain that because of the antibodies and location of this suspicious node that we could not biopsy it and that he wanted to contact my surgeon. That also took me by surprise. He told me if I did not hear from him by Wednesday to message him and the surgeon. I got off the phone and filled in Nate. I was in disbelief that I was here again. Nate grabbed my hand as tears welled in my eyes and told me how sorry he was I was having to go through this again.
Saturday morning at 10:45 I was carrying my phone, that still does not ring, through the house when I felt it vibrate, looked down and saw, “private number.” It was my endocrinologist again. He had heard back from my surgeon. My children were of course being noisy, so I quickly ran to the back of the house to hide from them so I could talk to him. It is difficult to have a conversation on the phone about a subject that makes you nervous and especially so when you are being tracked by two young children with bloodhound sense. The gist of the conversation was that the surgeon also felt that what was seen on the PET scan in the right side at the base of my neck was likely cancer. The surgeon felt that surgery may be necessary but he was worried about my vocal cords. My left one was temporarily paralyzed in my first surgery. My voice was hoarse upon waking from surgery but returned fully within 6-8 weeks. Apparently my right vocal cord could have been compensating all this time for the left so my instructions were to call the following Monday to make an appointment with the surgeon so he could scope down my nose to look at my vocal cords and then discuss what to do from there. My endocrinologist again said, “If this is cancer, we have caught it very early.” After that conversation it again hit me that I was back to that place again. I am not trying to be dramatic and I know this time is so different, it is just that memories of that very difficult time in my life are still so tender.
I made the phone call to the surgeon’s office first thing Monday morning and was thankfully able to get an appointment for Friday, January 24th. I settled down more once I had the appointment because I knew there was a plan in place. I do best when there is a plan. Friday, our friend Roz relieved Nate at home to watch the kids so that he could meet me at the surgeon’s office. When the surgeon came into see me he said, “So there is a little something on your PET scan. I want to look at your vocal cords first before we go any farther.” He left, as quick as he came in, and asked his staff to set up the scope. The scope is about the same diameter as a #2 pencil, but not rigid of course. He has a fancy new machine that he did not have when I was his patient before. It has a video monitor on it so that I was able to see what he was doing too. I actually found it less bothersome and it did not seem to gag me as much as I remember the one before doing. It was also really cool, to see my perfectly symmetrical vocal cords in action. The surgeon pulled the scope and then said, “Praise the Lord!” I agreed, that was such a relief.
He then shared with us that the spot that lit up in my neck on the scan, just to the right of my trachea, is most likely cancer. It is in the scar bed from the first surgery with the nerve to my vocal cord, “the size of a cotton thread,” right next to it. This apparently makes it challenging to get to but not impossible, for his Harvard trained hands. He said essentially that it is small and slow-growing, but he thinks it needs to come out. He thinks surgery is best versus just watching it because of how aggressive it was the first time around, my younger age and that I had a very thorough first surgery, a very large dose of radioactive iodine, and I am hyperthyroid which means my thyroid stimulating hormone is suppressed, yet this little bit of cancer is still making an effort. I feel like I have the little cancer that could.
I was told that I did not need to have surgery next week or the week after but that I should have it out by sometime in the spring. I asked him if March was reasonable, since my husband is in his final semester of his nursing program and his spring break would be a good time for us. The surgeon agreed that March would be fine. He does his thyroid cancer related surgeries on Tuesdays, so before leaving the office we scheduled the surgery for March 18th. He also told Nate and I, during this appointment, that in other cases he has treated where the papillary thyroid cancer returned that after the second surgery it was gone for good. He expects this to be the case for me and that I will live a long life.
So, though we will not be positive until after the surgery, it looks like I have cancer again and yet I sit here typing this, more calm than I have been in weeks. Strange how not knowing is so much worse than knowing. I like to look for the positive perspective and in this case there are many:
- I have a knowledgeable endocrinologist who knew when something was different for me and he continued on with what he felt was the right course of action for me until this little cancer was found.
- The cancer is small.
- The cancer is slow-growing.
- The cancer can be removed.
- My left vocal cord is undamaged from the first surgery.
- In a small city in southwest Missouri, I have a Harvard trained surgeon with oodles of thyroid cancer experience.
- I have a new job in cancer research, with supportive colleagues, who have not judged me for my emotional behavior during this challenging time.
- My husband loves me, he really loves me.
- I have an amazing support system.
I have done my reading about this cancer and I knew from that and from what my physicians had told me before that a recurrence or persistence of this cancer was a strong possibility. I also have always understood and been thankful for how treatable of a cancer it is. What I have feared most is the need for another surgery. This next one will not be as extensive as the first, but it is still my neck being cut open and the recovery, though not as painful as the last, will be painful. In this case, I wish I knew less.
I had my radioactive iodine two weeks into my husband’s first semester of nursing school and he had to move out of our home with our 8-week-old and 2-year-old while I was radioactive. We just came off of his third clinical semester where he had emergency surgery to remove his appendix and gallbladder, I had my first cancer recurrence scare and one of our vehicles had to be replaced. Now as he is in his final semester we are dealing with this cancer again and I am going to have surgery. Wow, I can’t imagine how easy life will hopefully be after May.
Nate and I stood outside of the surgeon’s office Friday afternoon discussing what we had just heard. The sun was shining, the wind was blowing and the temperature was surprisingly above 40 degrees. While standing there with the man who has supported me through this much more difficult path than I ever dreamed it would be, a feeling came over me. The feeling was that we may finally have this little cancer that could beat, it was as distinct of a feeling as I had when my obstetrician found the lump in my neck and I knew it was cancer. God is good and my life is not easy, but it is great.
On November 30th while working on laundry my little shadow, Lilah, stood intently watching me. I pulled a blanket of hers from the washer and put it in the dryer. She wanted it and when I told her I had to dry it and closed it in the dryer, she cried. Not a fit, but just absolutely crushed that she could not have her blanket. It was her birthday and I stood there in awe of this precious two year old so full of personality and gumption. I get so emotional around her birthday because it is a mom thing to do and because of the circumstances under which she was born. I remember that time when I just wanted to get her here safely so badly and then to be able to take care of my cancer. That pregnancy that seemed like it lasted a lifetime is now two years in the past, I am cancer free and my Lilah is something else.
- Every time she asks me for a snack as I am handing it to her she says, “Bubba?” That is her way of asking for a snack for him too. She takes him his and then eats hers. Every time.
- She is crazy about her daddy and recently as she was falling asleep I heard her singing, “Daddy…Daddy…Daddy…”
- Like her mommy she needs her sleep and when she is done for the evening, she is done. This means that when she starts getting a little mean, it is time for bed.
- She likes headbands, bows and hats and every chance she gets she puts one on her head. When she puts a headband on over her fly-away blonde hair she looks a little like Bjorn Borg. Sometimes when she is wearing a headband I call her Bjorn and she looks at me like I am crazy. I think I am going to see that look frequently during her lifetime.
- She loves picking up trash and throwing it in a trash can.
- She cries when you put her blankets in the dryer.
- She loves dolls and can often be observed arranging two or three while exclaiming, “sit” and “stop it” over and over. Unfortunately some of Lilah’s babies do not come with the ability to sit on their own and therefore get scolded for being out of line. No, I do not sit in the corner and giggle when this happens.
- She calls my brother Joe, “Rae Rae”, the name my kids use for his wife Rachel. She does it intentionally. I watched her on Thanksgiving walking down the stairs and calling Joe “Rae Rae.” He said, “I’m Joe,” she said, “Rae Rae” and each time he corrected her she said, “Rae Rae” with more enthusiasm. Her brother, Zander, did the same thing. I like it.
- She is very good about picking up and putting away toys and often helps without being asked.
- When she gets put in time out she climbs up onto our big, black time out chair, turns around, slumps down in the chair, flashes me a smile and then says, “I nice!” I also do not giggle when this takes place nor do I ever put her in time out for weak offences just to watch this little spectacle.
- She is the reason my cancer was found and as big of a blessing as she is all on her own, for that additional reason I will be eternally thankful.
- Every time someone gives her something she says thank you, or rather, “tank ooo.” Often she even says “tank ooo” when she is the one doing the giving.
- She loves her brother so much. She doesn’t entirely trust him because he can play rough sometimes, but oh does she love him. When he runs, she chases while giggling. Even if he does not intend to be playing with her, she thinks he is.
- Everything Zander does, she does. Everything. (Unfortunately.)
- When I am home with the kids Lilah follows me every where I go. She will play independently, she just does it within four feet of me.
- When Zander is not nice to her and I tell him to say sorry, she often leans in first for a hug and says, “Saweee” even though she was not the offender. She is also good about apologetic hugs when she is the offender, which may happen more frequently than the other way around.
- When she puts a hat, a bow, or a Bjorn Borg headband on she states, “Ooh pretty!” and I stare at her, even if she is a hot mess, in realization that she is the most beautiful thing I have ever seen.
Happy second birthday baby girl!
Mommy and Daddy love you to the moon and back…
and then some more…