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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…
So I have the dumbest phone in the world. It is a Samsung Infuse and trust me, do not ever go near one. I have warrantied it 5 times in 2 years. Today of all days, when I was waiting on BIG news, the stupid phone stopped ringing and would only vibrate. After a day of carrying it with me to every bathroom break, every move I made more than two feet away from my desk and holding it in my hand while driving, my doctor finally called around 6 pm tonight.
Drum roll please…directly from the scan report: Negative exam. No evidence for residual functioning thyroid tissue or metastatic disease. Now I’ll pause for you to wooohooo, dance, fist pump, high five, or send me texts saying you told me so…
We do not know why my antibody level is elevated. We just know that my immune system is mad for some reason. There is a chance that something small (smaller than a peanut specifically) is trying to make a comeback and that is why my blood work has changed. The plan is to increase my thyroid hormone medication to essentially stunt anything that is trying to make a comeback and to repeat my labs in December. If the antibody level does not go down then he will repeat an ultrasound and see if I have any changes in the lymph nodes in my neck. As confusing as all that is and as unnecessarily complicated as this stupid cancer and the endocrine system are, this scare was just a scare and now I for real want to party!
Cancer sucks and yet I have been so blessed. Because I get to raise my kids and love my husband. I get to hang out with my crazy, supportive and loving family and friends. I have no surgeries and no more radiation in my near future. I can breath again, really breath again. Thank you for every prayer, every thought, every worry and every encouraging word. I love you all.
My friend Jen C, who is a true inspiration of a friend, has on two occasions in the two years since my cancer diagnosis messaged this to me, “Where you go…we follow.” To a person going through a cancer journey that is the ultimate testimony of support. I chose pretty much from the beginning to wear my heart on my sleeve through this experience. I made that choice largely because I knew I could not do this alone.
On Friday, September 27th I found out that there was a worrisome change in my lab work. My doctor voiced concern that it could indicate that the cancer is returning and started the process to get me set up for a full body scan. I found myself shocked by this news as I had just settled into the feeling that it was truly gone. I published a blog that night, 86 the Cheese, to fill friends and family in and because writing is one way I cope. The following day was spent filled with friends, who showed up to support me while Nate was working. My friends Tina, Marti and her young daughter Emma went with my kids and I to a fall festival in a nearby town. I felt surprisingly good and at peace that day walking through the rain and eating fresh, hot corn with my kids.
After the festival my friends came on over to our house so that I wouldn’t be alone with the kids until Nate got home from work. Later that evening after Nate did get home, Marti and Emma went on to their home and our friends Debi and Mark joined the party. It is wonderful to be surrounded with friends and family when you’ve learned potentially life changing news.
Sunday evening I sat in my bed, doing what I always do after learning something new about my health: research. I try as best I can to find medical journal articles and websites that are run by reputable organizations like the Mayo Clinic. I found a journal article that was a prospective look at over 200 thyroid cancer patients that had thyroglobulin antibodies. I’ll leave out the details, but it once again demonstrated that I am not apart of the norm. I of course fell into the 9%. I sat there alone worrying about it for a bit then shared what I read with Nate, well if for no other reason than because misery loves company. I proceeded to worry through the night and did not sleep well. I knew then the research had to stop. The next day after getting my tests scheduled for all the way in November, I was thinking about all the offers I had been extended for help with whatever I needed. I posted the following on Facebook:
So my tests are scheduled the week of Nov 4th. Since this is 5 weeks away we are going to enact Operation Distract Janna. Because otherwise I will read every website and every medical journal published and by Nov be convinced that I have mets in my lungs and that surgery and radiation are going to be necessary. So if you’d like to keep me from over-reacting and torturing myself I’m open to happy hours, play dates, pedicures, house visits and so on…
Let me tell you even with as open as I have been throughout this whole mess, this was a huge step in my growth to ask for specifically what I needed. When you ask, they will come and boy did they.
Saturday, October 5th was the first installment of Distract Janna. It began at 4:00 pm with me meeting up with Jen C for happy hour. At 5:00 pm we were joined by our friends Jeani, Roz and Latoya and moved to a nail salon for mani’s and pedi’s. Then, after that Roz, Jeani, Latoya and I moved to a local restaurant for some drinks and appetizers. Our dear friend Tina, caught up with us there. Prior to this day I purchased some cancer awareness bracelets in the thyroid colors that say, “No one fights alone” (because no one does) and gave them to my friends that evening. They each ripped into the little plastic packages as if I had given them something much more valuable than a two dollar rubber bracelet and my heart filled up a with a little more love.
Thursday, October 10th was installment number two of Distract Janna. Jeani, Tina, Roz, Marti and I met up at another local restaurant for happy hour (Distract Janna was just a tiny bit, Janna just wants to party). While we were there our good friend and Nate’s former EMS partner Katie stopped by quickly to get a bracelet from me. Then in a very pleasant surprise, Marcy, a friend I had not seen in five years came for a visit and later my friend Megan joined us. We had so much fun sitting on the outdoor patio having delicious cheep drinks and appetizers, telling ER stories, laughing for hours and at the end of the evening sitting by the fire. It was a good, good night.
Installment three of Distract Janna took place on Saturday, October 12th at Oktoberfest that was sponsored by The Brown Derby, a local beer and wine destination, and proceeds went to The Doula Foundation, a local non-profit. My brother is the Director of Communications and Special Events for The Doula Foundation and his wife Rachel invited me to join her. It was a very fun afternoon and we ended up being joined by my brother Jimmy, his best friend Jerry and Rachel’s parents, Allen and Delana. It was another gorgeous fall day in Missouri and we all had so much fun running from tent to tent tasting beer. (Remember: a tiny bit Janna just wants to party.)
Installment four of Distract Janna oddly enough began the day before installment three and it was unplanned, very unplanned. Friday afternoon, October 11th, my husband Nate who had not been feeling well for two weeks gave into severe abdominal pain and went to the ER. He spent the evening there and the doctor through an ultrasound determined that there was a problem with his gallbladder. He was sent him home with some pain medicine and instructions to follow-up with his regular doctor for an additional outpatient test for ultimate diagnosis. Saturday morning he woke up and went to work at the same ER and they sent him home. He reported to me at that time that his abdominal pain was getting worse, took some pain medicine and went to bed.
A few hours later I dropped our kids off with my mom and I headed to Oktoberfest. While there I received a text from Nate saying that he was chilling and his temperature was 99.9. I texted back to him that I was concerned because the pain medicine he was taking had Tylenol in it so it could be masking a true fever. Thirty minutes later he texted me a picture of the thermometer that said 100.3 and a note that said he could hardly walk because he hurt so bad. He told me he thought he needed to go back to the ER and I said, “Go.” As healthcare workers, that work specifically in the ER we worry about silly things like being that patient that comes back in less than 24 hours later for the same complaint. When I had my post-op infection following my total thyroidectectomy, Nate and my mom worked on me all day long to get me to go in to be seen. My surgeon had called me in a prescription for antibiotics that morning and I did not want to be that patient who did not give the antibiotics a chance to work. When I finally went in, I was admitted for two days.
Nate went back to the ER Saturday afternoon. When he checked in his temperature was 101.3 and after only a couple of minutes examining him the ER physician said, “you have a surgical belly.” Because he had the ultrasound the day before that showed a problem with his gallbladder the surgeon wanted a CT to determine if this problem was his appendix, which they suspected. The CT did indeed show an appendicitis and my poor guy’s temp got up too 103.2 that night. We couldn’t believe it. Who does this happen to, a bad gallbladder and appendicitis at the same time? I posted the following on Facebook:
So because we don’t do anything the easy way my poor, sweet Nate has appendicitis and a bad gallbladder. He’ll be having surgery early in the morning. An appendectomy for sure and may take the gallbladder at the same time. Prayers are much appreciated.
While Nate and I were alone in the ER treatment room I couldn’t believe how sick he was. I hated seeing him like that. I said to him, “Baby, I think our next 25 years are going to be awesome, because much of the first five has been ROUGH.” Shortly after announcing the latest turn on Facebook friends started making jokes about Nate going too far in his effort to distract me. He kept saying that he was “taking one for the team.” Early Sunday morning he had both his appendix and gallbladder removed and was discharged later that day with six surgical wounds to his belly.
We spent the next two weeks regrouping after Nate’s surgery and helping him to recuperate as he continued a tough semester in nursing school. I could not believe that he was really having to deal with this when the nursing program alone was already so much stress. My guy impressed me as he often does and got his highest test grade of the semester only three days after his surgery.
On Sunday, October 27th I began to prepare for my low iodine diet that I planned to start the next day. This diet is difficult and largely takes out foods that I love. I was at an emotional time in my month, I’ll casually add, but also found that preparing for this diet suddenly made the reality sink in that this cancer really may be coming back. It was an emotional day and I was frankly a hot mess. I took Lilah with me to the grocery store and specifically picked Hy-Vee because they make their own breads. I had called ahead to ask if they used iodized dough enhancers but forgot to ask about iodized salt. I stopped first at the bakery and asked a young lady if they used iodized salt she answered, “I don’t know” and blankly stared at me. “Well could you look in the back and see if there is even iodized salt back there, I can see Kosher from her?” I asked. Her reply was again, “I don’t know.” “Well could you call a manager?” I found myself getting irritated with the lack of effort to help me. Quickly I found myself developing into the Crazy No-Iodine Lady. She called a manager and he came out right away, looked at me with curiosity and kindly offered to call the baker. I told him I would stop back by to get the answer and thanked him for his effort.
A little while later I saw him in the store and he told me that he spoke to the baker and that they did indeed use iodized salt in their breads. I was so disappointed. I continued on through the store, disheveled looking with puffy eyes from crying earlier and Lilah chattering away in my cart. I neglected to look to see what she was chattering about until I heard something and looked to see about 1/2 pound of grapes falling onto and scattering across the store floor. Some people were trying to pass so I started kicking grapes out-of-the-way so they would not get smashed which made it appear as if I was just trying to kick them under the shelving. A very nice lady started picking up grapes and so I followed suit. I was thinking, “this day sucks.” The nice lady handed me the grapes she picked up and out of nowhere appeared the store manager to find the Crazy No-Iodine Lady with an armful of spilled grapes. He took them from me with a smile and as he and the helpful lady walked off Lilah bit into a grape and said, “Mmmmm.” We all chuckled and Lilah and I made our exit from the store as soon as possible.
Installment five was next and it too was very unplanned. Friday, November 1st, after a very emotional and challenging week I was so ready for the weekend. My dad called me around 7:30 pm and began to tell me about some numbness he was having to the left side of his lower lip, into his left jaw and in his left hand that had started around 4:00 pm. He thought it felt like an allergic reaction he had awhile back but nothing was swelling. I immediately began to worry about a stroke. After speaking with him for several minutes, he was not having any trouble with his speech, I told him that I thought he needed to go in to the ER. He listened to me and immediately got my mom to take him. I could not reach Nate or my brothers on the phone, but did get in touch with Tina, also a nurse, who was planning to visit me that night. She agreed with me that I did the right thing sending him in. I walked back to my bedroom and felt a panic starting to come on, “This can not be happening,” I thought, “your dad can not be having a stroke right now.” I took a deep breath and then thought, “You can do this Janna, you can handle it.” I called ahead to the ER and my old friends took great care of my dad from the second he arrived. I spoke with my mom shortly after they got to a room and she told me to stay home that he was in good hands. He was in the best by the way, being cared for by Hotdog, Casey, Chad, Amber, Dr. Greer and Monty. A little while later after Nate got home and as I was fidgeting on my bed feeling weird about being at home, I spoke with Jimmy who used his rarely utilized big brother voice to tell me that he would prefer me to go check on Dad in person and to make sure Mom was okay. I put on my shoes and went.
Dad was admitted to the observation unit for a transient ischemic attack (TIA) and further testing. There he was cared for by the amazing Meg, who has now cared for me, Nate and Dad. All in all everything came out okay and they considered changes seen on the MRI and CT images of his brain to essentially be normal changes of age. His blood pressure was a bit high so they adjusted his medications and made sure we understood that he needed to take an aspirin daily. On Saturday, Joe, Rachel, Mom, Dad, Lilah and I sat in Dad’s hospital room laughing as Lilah entertained us all. When the doctor came into to discharge him and as he was going through instructions I pointed out that Dad waited 3 hours to call me. Dad then told the story of how the symptoms began and he started looking them up on the internet. My brother chimed in that he had a new rule, “Janna before Google.” We all laughed and he was discharged 30 minutes later in good health. I have thought about taking the “distract Janna” request off the table though, since both my dad and Nate took it a little too seriously.
All of that gets us to now as I am at my parents’ house writing this after receiving my small dose of radiation yesterday for my upcoming scan tomorrow. I was given discharge instructions that said I had to stay four feet away from adults as much as possible for the next two days, but that I absolutely had to stay four feet away from children for two days. Well, as most children do not, mine certainly do not stay four feet away from me. Lilah might as well have a tether tied to me because she just moves with me around the house and if I am sitting on the couch, Zander is on my lap. With that small blue pill, that arrived in a tungsten cup, I earned a two-day vacation in my parents’ basement.
I sit here tonight a smidge radioactive, in awe of the support that I have once again been shown and worrying about what may lie ahead. I’ll be truthful with you, I have a horrible gut feeling about what this scan will show. I hope that it is just nerves and the unfortunate memory of a positive test result once before. But as the ultimate source of comfort I know, what ever the scan shows, whatever lies ahead,
where I go…you follow.