My Cancer Story - Papillary Thyroid Cancer

If you're ever in a doctor's office and the doctor says something along the lines of, "We think you have cancer", tell them thank you for the diagnosis, get a print out of whatever results they have, and then walk, no, RUN! And flee the premise immediately! This is the advice I give to you because it's the advice I wish I had heard before all of this. I figured it out in my own, but not as soon as I would have liked. Gah. Let’s back track. I’m so behind on updates that now I have to back waaayyy up so you have the whole story.

Sometime in March I noticed that a lymph node in my neck seemed to have grown. It was slight, but it was still odd and I figured I should ask the doctor about it. We are required to go for an appointment 6 weeks after giving birth as a final clearance sort of thing, so since I was already going in I figured it would be a good time to ask about it. I let the OB know and he felt it and said it was common to have lymph nodes in the neck, but since I already had a thyroid condition (Hashimotos), it might be a good idea to check it out. So he scheduled an ultrasound and I went in and got an ultrasound done on it. I had had an ultrasound done on my thyroid/neck a year and a half ago, so I suppose it was about time I went in for another.

I was called in some days after the ultrasound (on April 8^th), and the head surgeon informed me that since the ultrasound results had come back “suspicious”, a fine-needle biopsy would be needed in order to get tissue samples of my thyroid to send to the lab in order to get more information. I believe this is where things started to go amiss. I needed clarification and asked if they were just doing a biopsy of my thyroid. She responded yes. I took this to mean that the lymph nodes were of no concern and that while checking them out they found there was actually a problem with the thyroid. This line of thinking was false, because the head surgeon knew nothing about my lymph nodes, because the ultrasound tech did not submit pictures of them. Somewhere along their line of communication, my original concern got lost, and I failed to double-check it properly. I would not know this for months to come though…

She asked when I would be free for a biopsy. I glanced through my iPhone calendar, which was maxed out, and then asked, “How long does it take?” She shrugged, “15 or so minutes”. “Do you have time now?” She was surprised I was ready for it then and there, but she had the time as well, so she grabbed an assistant and we got it done at the same appointment.

I had never had a biopsy before, and I hope I won’t ever need another one! First she gave me a shot for anesthetic, then she inserted a series of “fine-needles” in various places around my thyroid and withdrew tissue samples. (I believe it was five total insertions/samples) It was a fairly brief procedure and my LO sat in his car seat being his genial self the entire time. If you ever go in for a biopsy… be warned, the anesthetic only takes the edge off. You still feel it! I was thinking I would be completely numb, but that was not the case. I could definitely feel it, and man if those are “fine” needles, I don’t ever want to feel bigger ones! There were several small bleeding spots left, and my throat was sore and bruised for a few days, but aside from that there were no side effects.

They said it would be some time before the results came back and I scheduled a follow-up appointment the first week in May. Apparently the head surgeon attempted to call us later and reschedule, due to the fact that she wouldn’t be available, but no such phone call ever reached me. So I showed up the day of my appointment and the second surgeon in charge met with me. Asking what he could do for me I replied that I was there to get the results of the biopsy done nary a month past. He clicked up my files on the computer and then informed me that these results had similarly come back "suspicious". There’s that word again… it’s making me feel suspicious how often they use the word “suspicious”. “Suspicious for…?” I narrowed my eyes. Please, just tell me straight, I get tired dancing around it like this. “Papillary Thyroid Cancer”. “Okay.” I gave a nod. “So what do I do now?” He informed me we needed to get it removed as soon as possible and wanted to schedule the surgery in a couple weeks time. However, I was flying to the states to surprise a good friend for her wedding, and I would not be available until after. (And the wedding was lovely! And I have a long blog post about it that I still haven’t managed to get published… but I will someday… hopefully within the same calendar year…) So they scheduled the surgery for the day after I returned, June 6^th.

A week or so later I met with the head surgeon, who had wanted to meet with me since I missed her call/meeting with her personally. She informed me she would be the one to do the surgery, and that she only planned to take out the right lobe, where a small goiter was forming and the suspicious cells originated from. She would take out the cancer (if indeed that's what it was) and then I should be good to go. I would need to be on Levothyroxine, a thyroid replacement, for the rest of my life, but otherwise I should be fine.

I was bummed it had come to this, and I asked her if there were any alternatives to surgery. She said she would look into it, but that there were none she knew of and that this was “The recommended course of action”. I was also told that of all the cancer’s to get, thyroid cancer was the best one because it had a very high survival rate, upwards of 93%. That sounded good to me. I asked many more questions; would I require radiation therapy? (no), could I have a copy of the pathology report? (yes), do I have a stage of Cancer? (stage 1 if it is indeed cancer) how much experience had the surgeon had with these kinds of surgeries, long term effects, what the healing process looks like, how it would affect breastfeeding my LO, etc. As for healing, she said it would be best if my hubby could take at least a week off from work, and that I wouldn’t be allowed to lift anything (including the baby!) for at least two weeks. I also wouldn’t be able to feed my LO for a few days as I waited for the medications to get out of my system. We also changed the date of the surgery to five days after I returned from the states, so I would have time to unpack and adjust to the time difference.

To be perfectly honest, I wasn’t too concerned about it all. Everyone else was so nonchalant about it, it seemed like you go in, get the surgery and then it’s gone. They answered all of the questions that I asked, and I didn’t feel any different than I had been, so it was simply another item to add to my “to-do” list, and I plugged the surgery into my iPhone calendar along with a reminder a few days previous so I wouldn’t forget.

I had several other appointments in between the beginning of May and my surgery in June. The hospital recommends that people make a will before major surgeries, so my hubby and I made an appointment at the legal office and consulted with them and drew up a will. The most difficult part of the will was deciding who would get our most precious treasure, our DS, in the “unlikely and unfortunate” event that both my husband and I should perish. There were spots for three back–up guardians. This was rather nerve wracking. Our LO has PKU, he requires daily medicine, will have dietary restrictions, and will require blood tests to monitor his levels for much of his life. Would anyone take him with the extra burdens involved? After much thought, prayer, and consulting of people, we found several kind and spectacular couples who were willing to take on our kiddo in the unlikely and unfortunate event we should both pass. (That was a load off my mind!)

Another appointment was with the anesthesiology and surgery department and the nurses who would be assisting with prepping me for surgery. However when I went in I met with one person, and he was really just a “forms” guy, a paper pusher that had lots of documents for me to sign but little little knowledge to lend. He was able to offer me basically NO information about the surgery and process I was about to undergo and I found him very unhelpful. It was a brief meeting where I was required to sign my life away, designate who my guardian would be during surgery day and what not. I gained some information as I signed away though, like everything that could possibly go terribly wrong in surgery! One example is that they could accidentally nick or paralyze a vocal chord as they fished around my in neck. (Awesome! Let’s hope that one doesn’t happen…) This did not help my confidence in the procedure, yet at the same time I was glad to know the possibilities. (Better than being surprised after!) 

Just before surgery. 

On June 10^th I went in for the surgery. (And I had just barely readjusted to the time difference after my brief stay in the states) We dropped our LO off at a friend’s super early in the morning and arrived at the hospital by 6:30 am. I was required to have a designated person there to drive me home and what not, so Troy took the day off and spent most of the morning during my surgery reading.

When we arrived I changed into one of their lovely hospital gowns and nurses came by to make small talk. They also needed to get an IV in. Honestly, this was the part I was most nervous about. For those of you who read about my son's birth story back in February, you will understand why. A friend of mine happened to be the one inserting the needle. I gave her the spiel, “Use smallest size needle possible!” and “This is really the best spot” (indicating to the crook of my right arm). However the right arm is inconvenient for them and she tried to put it into my left hand, and the vein blew immediately. She then did one further up on my left arm, but that was a no go as well. Then they asked the surgeon’s husband to do it, because although he didn’t work at this hospital he happened to be there and was trained to do it. His first in the crook of my left arm was also a no-go. I sighed and glanced toward my husband as I mentally prepared for many sticks, future bruises, and possibly passing out from trauma and not anesthesia. However his next stick in the crook of my right arm made it. Hallelujah! That wasn’t nearly as bad as when I was in labor and had eight plus sticks… They hooked me up and I passed out not long after that.

The surgeon signed my neck above the right thyroid

I woke much later, in the early afternoon. They said the surgery had taken longer than they had expected, as they found more than they had expected. What was going to be only a right lobe removal ended up being an almost complete thyroidectomy. The Surgeon said she left about a fingernail size of the left Thyroid lobe as well as my parathyroid glands. (A fingernail size? I guess if such a small amount is worth leaving, cool, I still got it) She said she did a once over as she was leaving the operation and that the parathyroid, vocal chords, and lymph nodes looked good (yay, no paralyzed vocal chords!). I was surprised to find I had a long tube coming from my neck, attached to a small container for drainage (this was to prevent swelling and allow the blood to escape). They told me this would need to be there for at least a day and that I would continually empty it as it filled. (It would have been nice if at one of the many meetings I had attended they would have told me this would be there, as it would have been nice to have been warned and not surprised...) Once the anesthesia began to wear off I was also surprised to feel sore spots around my jaw line. I reached to touch them and realized I also had some blood coming out of several spots, and one on my neck. When I asked about these they said that they had to sew the flap of skin up to my jaw to keep it in place (Eep!) Another thing I wish they would have warned me about before hand. I simply like to be informed and prepared, and after all the meetings and questions I asked about proceedings, I felt rather frustrated they had left so many details out about the surgery. It certainly didn’t help my trust issues to wake up with random things coming out of me and random bleeding sore spots. I was pleasantly surprised however with the incision scar though. I had googled some before I went in and mine wasn’t nearly as bad as any of the others I had seen. It was much lower and smaller, right next to the collarbone and fairly symmetric. As far as thyroid scars go I definitely got a good one.

Going home was nice. They had wanted me to stay the night (in the labor and delivery section since it’s a small hospital and that’s the only open section overnight), however after staying there for my son's birth I vowed to do my best not to have another hospital stay there. And that miserable nurse still worked there, so for the sake of her life and mine, it would be best if I got to go home, which the surgeon gave me the okay for! I pretty much slept as much as possible after that. I would use this breathing exercise device in order to clear gunk that may have gotten into my lungs, and I emptied the drainage container every once in awhile (gross!), but otherwise, I tried to sleep it off.

My throat hurt too much to eat after that, which was a bummer because I have lovely friends and they brought us a meal every day for a week! (Which my appreciative hubby eagerly devoured!) All I really wanted was soup, and our kind landlords made me a warm broth with teeny tiny pasta in it every evening. Man, that was really the best and pretty much only thing I could consume. I couldn’t lie down because it hurt my neck, so I slept at an incline for about a week, slowing lowering the incline until I was able to sleep flat again. Talking was also pretty much out of the question. I could whisper a little bit, but not much and it was straining. The surgeon said all looked good on my vocal chords, as she checked them as she was leaving the operation. However it’s now been three months since the surgery and my voice is not back to normal yet. I still can’t sing (oh how I miss my nightly lullabies with my son!) and I can’t raise my voice, so being heard in a crowd is a struggle. Any event with more than a few people or multiple conversations in a room, mean I basically become an observer because I can’t speak loud enough to be heard. The surgeon said it could take a few months, but on one of the blogs I read, a woman said she didn’t feel she fully recovered and normal until almost 10 years after her surgery. (Eep!) People continually ask me if I have a cold of some sort when I’m out, due to the odd tone and rasp. Sorry, going on a tangent, back to the surgery…

Due to the fact that I’d had less than a month from the discovery to the surgery, and I’d spent nearly a week of that time in the states, I hadn’t had time to collect a decent store of milk for my LO. This led to a quick introduction of solid foods in order to help stretch the milk, as well as me not taking any pain meds so I would be able to feed him as soon as possible post surgery (once the anesthesia had completely gone through me). Having a little one definitely complicates the health issues at times. My dear hubby, bless him, and I have very different ways of parenting, and having less experience with little ones doesn’t help his situation either. He introduced solid food a little too vigorously, as in 3 times a day, 3 different foods, and without mixing them with milk to ease the transition as is normal. So we had a rather unhappy, constipated, and stopped up little guy for a while. My hubby also doesn’t mind leaving him to scream and cry in the crib while he gets stuff done. So naturally, despite being told not to pick up anything for a few weeks, I was grabbing and consoling the baby the day after surgery so I wouldn’t have to hear the screams and cries from our room and he wouldn't think his mother had abandoned him.

Neck pre-surgery

I had to go back to the hospital every few days to get the incision looked at and to get blood drawn and what not. The weirdest feeling ever was when she pulled the tube from my neck to the drainage container out! She held the skin around it in place and counted down, then she gave a good tug and that’s when I realized just how much of the tube was inside me! It is bizarre to feel a long tube moving through your body and sliding out. Ew!

I was given large tape and Band-Aids and told that the more I kept it out of the sun the better, so the fresh skin would be able to heal best. So all summer since then I’ve worn my fashionable oversized Band-Aids, as well as the occasional scarf and high-necked shirt to ensure that the sun doesn’t burn the fresh skin.

Eleven days after the surgery, on June 21^st, I went in for another post-op appointment. My surgeon said they now had the lab results back from everything they took out and sent in, and that I was most definitely positive for Papillary Thyroid Cancer (no longer “suspicious” but confirmed). They had also found and removed a 4.2 cm bilateral tumor (eep!) She informed me that although everything looked good as they left the operation, she wanted me to undergo a Radioactive Iodine Treatment to help be sure it was all taken care of.

This took me aback. I thought back to our numerous conversations pre-surgery. No one had mentioned to me this would be a possibility post-surgery. I had specifically asked about Radiation Therapy (which they said no I would not need), and although Radioactive Iodine is different, I would have appreciated them mentioning that it could be a possibility so I would have at least been informed and prepared.

I asked my questions and here is what she told me. I needed to get the procedure done in the next 2-3 weeks tops as that was the opportune window. It would also mean a multiple day stay at an Italian hospital (where I would have no clue what was going on, hooray language barriers!), and where after taking the stuff, I would be put in a sort of quarantine. I researched it online, and others told me from their personal experience that since they were radioactive they could not come into contact with anyone for several days, and that the hospital staff would drop the food off outside the door or just inside, then they would go and retrieve it when they left. (Sounds like a prison style food exchange!) And then once allowed home, they were still advised to keep distant from others and were required to sleep alone, to shower several times daily, to do their laundry separately for a few weeks after the treatment. For those few weeks they also had to use plastic utensils and avoid all electronics. (oh my… I would be by myself with nothing but books for weeks. And while the book part didn’t sound bad, it also seemed a very depressing way to spend one’s summer in Italy)

Also we shouldn’t plan on conceiving children for at least another three years, as they would be likely to have severe problems, deformities, and disabilities if born sooner. (Yikes! And don’t get me wrong, I had wanted some time off before having another one, but this would mean our LO would be well over four before another one had the chance to come along, and that was definitely a larger gap than we had hoped for)

This would also mean I would need to wean my son, who wasn’t taking so well to solid foods (but can you blame a four month old?), in the next two weeks (since he has PKU regular formula isn’t healthy for him. There is a special PKU formula for infants, however on this short notice and required shipping time from the US, the dates wouldn’t match up anyway). And who would watch our DS after this? I wouldn’t be able to go near him and my husband had already taken a lot of time off of work for my surgery. I would need to pawn him off on friends or enroll him in an Italian care facility (which technically don’t take babies until they are 6 months because Italian women get 6 months off for baby leave, but if you pay a good sum extra, I’ve been told they will sneak them in a month or two early) Shoot, this was going to be expensive…

Neck a week after surgery

Also, I had started having great difficulty sleeping, and my hair was falling out like crazy. I would run my hands through it and get a large handful of hair back, over and over and over! The surgeon said this was due to stresses on the body from under going a major surgery and having anesthesia, along with the fact that my thyroid hormone levels would be out of wack for possibly up to 6 months. I had also woken up one morning to find myself terribly depleted. I could hardly get out of bed to get my crying baby. (hubby was back at work at this point) I was so weak I nearly dropped him while carrying him, and I was intensely dizzy all day long. My vision would occasionally start to show little fuzzies/sparkles, and they would grow until they completely covered my vision (while I was “at rest” sitting down). I don’t know if I blacked out or fell asleep, but I woke once with a start to hear my LO shrieking as he had rolled out of my arms and off our bed and hit the floor. Shoot. That sucked. At that point I called the hospital and told them what was going on, and the nurse said it didn’t sound good and I should drive over so they could do some tests. I laughed at her. Really lady? I’m passing out just sitting here and I have an infant I can hardly hold, and you want me to load him up in the car and DRIVE over to the hospital? Humorous to be sure. I pondered if I had a friend available to come and get me, take me and the munchkin over there, and then hang at the hospital as they ran all these tests. This seemed a slim yes as well as a lot of work and time I didn’t have. Hubby had biked to work and IF he were able to get off immediately, it would still be awhile before he would arrive home via bike. My option seemed chosen for me and I told her no thanks, I was going to stay home. So I hopped on Google and read from others that it was likely due to low calcium levels from large loss of blood the week prior. So I downed some calcium rich foods and swallowed some calcium pills and curled up with my baby for a long nap (or as long as babies let you nap). I woke feeling much better and then received a call from the surgeon, who had been forwarded my concerns. She told me what Google already had, suspected hypocalcaemia, and she scheduled more blood tests for the next chance I could come in. All this happened and it had been barely over a week since surgery at that point in time, and I was unsure of what other symptoms would arise. Adding this new Radioactive Iodine treatment and all that was to result from it seemed to only compound the stresses that were going on.

Neck, 3 months post-surgery. The pink dot on
the left is where the drainage tube entered/exited.

My mind was racing with everything that was going on and I once again asked if there were any alternatives to doing the RAI, and she responded with the same, “This is the recommended course of action” several times. How very formally uninformative… I did some research online and came back with more questions. On one of the blogs I read of someone going in for his third treatment. I asked her about this, as the way she had presented it gave me the impression it was a one-time deal (kind of like how surgery was supposed to be the end of it). Before she had seemed to say this way they could be sure they would get all the infected tissue out, THEN it’s really truly gone. But when I asked her this question about the fellow who had several treatments over many years, she said that no, sometimes it doesn’t get it all and they may need to do the treatment again. They would do several body scans after the treatment and based on the results they may schedule another future round of RAI. Oh thanks Doc, when were you going to tell me this??? All these things I’m dealing with now and the dilemma of what to do with my son and hubby getting time off, you mean, this may happen several times for years to come? I felt like this would have been another one of those “surprises” post treatment that I would have been frustrated for not being informed of sooner.

This was the moment when I began to formulate the advice I gave you at the start of the post. (Remember the “RUN!” advice? Just refreshing…) I felt like I was being led on and not fully informed. I was beginning to regret my decision to go ahead with the surgery in the first place. Rarely is there ever only one option, surely there was a path that I had missed… It seemed like I was being told, “Oh, now you’re almost done” and “Do this and then it will be gone”. But this tiger was tired of jumping through the hoops of their circus. I informed her I wasn’t comfortable with the treatment option and would like to forgo the Radioactive Iodine. I didn't know at the time what the alternatives were, but I knew there must be something better, something that made more sense than what I was being offered. 

She once again told me that RAI was the recommended course of action, but that in all likelihood I would be okay. I was young and this was not an intense form of cancer and everything had looked good as they were leaving the operation and closing the incision. I should be fine. They might try and run some sort of test like a CT scan in order to see if anything would appear, but it didn’t seem too likely. She said she would call the Italian hospitals and see if we could get a scan done at one of their facilities and that she would call me back and let me know when I could go in for one.

So time passed… almost two months actually. I slowly started to feel improvement. Not my normal crazy energetic self, but not as flat out exhausted as before. I went in for occasional blood check ups and my dosage of thyroid hormone began to rise. (I’m happy to report my hair isn’t falling out in crazy clumps! Woohoo!) Somewhere in mid August, as I was sweeping my hair up into a ponytail, I noticed that it seemed I had grown another lymph node in my neck. It was smaller than the first, but it definitely hadn’t been there before, and it seemed an even smaller third may be present, but it was much smaller and it was hard to tell if it was even there. “Really?” I thought to myself. The doc had said lymph nodes in the neck were normal, and they did an ultrasound on them and they didn’t seem to care about them, but this didn’t seem normal. I figured I’d bring it up at my next appointment with the surgeon.

So at my next appointment I brought it up. “So the lymph nodes in my neck, they’re fine? I feel like I’ve grown another one, is that normal post surgery?” She cocked her head and gave me a puzzled look as if to say, what lymph nodes? This is when I believe we both gave an internal, “shoot, we missed something”. She felt my lymph nodes and asked if I’d mentioned this to her before. I thought back through our conversations. It had been months now, and I’d seen so many people, from the original OB to the ultrasound tech, to the various surgeons and nurses, but had I EXACTLY spoken of them to her specifically? I couldn’t recall except for that one conversation when we first discussed the ultrasound results. She then informed me the ultrasound tech never scanned them. She apologized for not having checked them herself, as that’s usually recommended procedure when one is dealing with thyroid and things in the neck. I was confused, I thought she said she had checked them on her way out of the operation? During her once over as she was sealing things up? Apparently she had meant the lymph nodes beneath the thyroid, not above. I was now kicking myself, for although I had done a lot of research and had been asking as many questions and clarifications as I could, I had failed to triple check my work and be super specific with this, and now I felt the impending work that could have been taken care of the first time around.  

She put in an order for another ultrasound of the lymph nodes then and there. To be doubly safe, she put in two orders, one for thyroid and one specifically for lymph nodes so hopefully they wouldn’t miss the importance this time. She also scheduled a CT scan at an Italian hospital a week later (as the base hospital doesn’t have that ability). I walked downstairs to the Radiology department to schedule an appointment for the ultrasound order she had just put in. I walked up to the front desk where there was an ultrasound tech and said, “Hello, I’m Shiloh Coe, and I’d like to make an appoi…” “You just missed your appointment”, she interrupted, blandly. Without a tone or expression I couldn’t tell if she was cross or just informing me… I furrowed my brow. The surgeon only had the ability to put in an order, she then specifically told me to go down and schedule a time to come in and fulfill the order. How could I have already missed it? “I didn’t have an appointment today… I was just upstairs with the surgeon as she called in the order,” I replied, informing her back. “No, you had an appointment at 2:30pm” she responded in her same robotic voice and expressionless face. I glanced at my iPhone clock, which read 2:40pm. (The military takes time VERY seriously. If you are a smidgen late, it can go on your husbands record, in a very bad way…) I decided that now would be a bad time to argue how wrong she was, and instead being nice and apologetic seemed the best route. “I’m so sorry, I had no idea I had an appointment today. Can we reschedule for another time?” That seemed to work, and I don’t think it went on any record anywhere. So we “rescheduled” for an early slot the very next morning.

I went in early the next morning, and my hubby decided to take off work and come with me, due to all manner of ridiculous things the hospital had put me through as of late. (I have left all sorts out because this post is already incredibly long and they would be tedious additions, just know that I had been at the hospital everyday that week, and numerous days the weeks previous, for everything from my condition, to my husbands wisdom teeth getting pulled, to my son and his condition, and I had been getting the “run around” from all sorts of places like case management and doctors etc.) He was hoping that his presence in uniform might make things easier for me (as spouses can often get shafted in military organizations :/).

I checked in via kiosk, as is increasingly common here (why talk to a real human when you can talk to a machine!). I put my military spouse ID card into the machine and my information popped up. “(My name), is this you?” it read. I clicked yes and continued to confirm the gobs of details I seemed to confirm every day. Yes that is still my birthday, yes that is still my address, etc etc. Once the process was completed, I was bummed to see the same robotic-like tech I had spoken with yesterday come out to get me. (Hm, maybe it is better talking to a kiosk…)

My hubby stayed with our kiddo in the waiting room. I attempted to motion him back, but unfortunately he missed it as I was led away. I laid there on the examining table as she drizzled a very generous dose of warm goo for the probe to swim around in. As she took her series of pictures she began to show her human side and made small talk. She asked if I knew why I had my thyroid removed. That seemed like an odd question… “Yes, I have Papillary Thyroid Cancer and it needed to be removed. Why do you ask? Do people normally not know???” I asked. “Oh yea, I ask everybody that comes through, and many don’t know why they had surgery. The Doctor just told them they needed to so they do”. I was in disbelief. I couldn’t imagine going into surgery without first knowing WHY! The faith (or is it blind ignorance?) some people put in doctors astounds me.

As she covered the lower regions of my neck and thyroid I asked her how it was looking. She told me she wasn’t allowed to inform me of the results and that the doctor could tell them to me later. Ah… patient is the last to know eh? As she was finishing up I asked if I could view the pictures she just took of me. The scientist part of me always enjoys looking at these things, and other techs have shown me x-rays, how they do blood work, and ultrasounds before, and I usually get to learn a thing or two about the procedure and what to look for. This tech was not so friendly and didn’t feel like sharing. Instead she repeated that a qualified doctor could show me the pictures if I wanted to see them later. It seemed rather rude when all she had to do was turn her computer screen toward me so I could oo and aw over the pictures she just took. She then told me I could go because she was done, and she prepared to put her instrument away. I definitely didn’t feel her go over the lymph nodes. Oh bother, not again…

“Did you go over the lymph nodes?” I asked as kindly as I could. “No” she responded, not looking at me as she typed information into the computer. “Oh, well the surgeon needs pictures of those as well” I said, lying back down on the table. The tech looked over at me responding, “The order was for the thyroid”. “There should be TWO orders there. I was there when she called them in. She specifically wanted the lymph nodes done.” I informed her, trying my best to be patient and not give her the building rant in my head about how it was dummies like her that messed this up for everyone in the first place. “There is only one order” she responded flatly, still without expression. (Please can someone program some expressions into this woman!) I breathed deep, and did my best to convince her. “Trust me, this is the whole reason I’m here”. She blinked and grabbed the heated goo again. I inwardly celebrated. Hooray! I was finally getting pictures of something that was supposed to have been taken care of months ago…

The goo ran into my hair as she ran over the lymph nodes and took more pictures. Then as she put the probe back and began typing again I asked her if I was good to go now. She said, “No stay here. I’m going to ask _______ if he wants anymore pictures taken”. I knew then that she must have found something, if previously I had been good to go, but now after much difficult persuasion for these photos to be taken she was unsure if even more were needed which required her to consult the head of radiology, something must have come up. As soon as she was out of sight I leapt off the bed and flew to my purse and dug around for my iPhone, silently apologizing to it for ever separating from it in the first place. I scurried over to her little computer corner and quickly snapped as many pics as I could of what was on the screens. Then I pocketed the phone and studied the screens for myself. I glanced over the pictures, noting what little I could decipher from the shapes and colors. Then I saw the typed information. Here is one of the screen shots. Do you see the name at the top of the screen?

At this point she walked in. I could see that by looking at her screens, I had pricked some deeply hidden emotions and expressions, but before I could finally be graced with them I clarified, “Are these my pictures?” “Yes” she responded with a slight gritting of teeth. “Ah, well I am not Sheila Cole. I am Shiloh Coe.” She only blinked at me. I waited, and I realized why this may be why there weren’t two orders in, they had the wrong person! I pointed to the screen. “Sheila Cole. Does there happen to be a Sheila Cole on this base? If so, someone should let her know that she missed an appointment yesterday…” The tech looked at the screen and then back to me and said, “That’s you. You’re Sheila Cole”. Um, What!?! Are we playing alternate universe right now? This is not funny… “Shiloh Coe” I said again, slower and louder, hoping that somehow that might make a difference. She blinked her robot face at me. I sighed and ran back to my purse (why do I always set it down so far away from me?) and dug out my military spouse ID card. (which, as you may recall, was required by the kiosk to sign in. It scanned me and presented my details, which I confirmed. So HOW then do they not have the right patient on their screen right now??? Don’t even get me started on how many difficulties like this I’ve had… I am sometimes amazed we are capable of winning wars…) I showed her the ID card and sounded out my name, very slowly. “Shy-low Co”. I had finally gotten the right pictures, and I really wanted the results to go under the correct patient name so my doctor could find them and I wouldn’t have to do this again.

After her eyes flicked from my ID card to the top of the screen, a brief hint of realization crossed her face before her robot arms directed me out of the room and her monotone voice said, “I will fix it. You can go now”. I exited the Radiology department and rung a different tech to get me a copy of the pictures as soon as possible. I like to have a cd for my personal records, but I also needed to take the results to the Italians for the CT scan.

The CT scan was an interesting experience. My hubby stayed home to watch our DS while I ventured to an Italian Hospital I had never been to before. Once I got inside, I had some rough directions the doctor had printed out for me because naturally, all the signs inside were Italian and anyone I might want to ask for help/directions, also spoke Italian. Despite taking a circuitous route there, I eventually found my way to the correct department. The halls were darkened and few people were around, save for a maid mopping the halls. I was told they reserve this time slot of American patients and as such, I would be the only one there. Once I found the place there were only two Italians working there. One spoke English fairly well. Fortunately for me, I had researched roughly what the proceedings would entail before I arrived, so I already knew what to expect and didn’t have to entirely rely on his broken English to inform me.

I knew I would have to take a substance, but whether orally or intravenously I was unsure. Turns out I got to do both! He told me I would need to drink something and grabbed a water cup from the water fountain nearby. He poured some liquid into the cup, picking a line at the bottom of the ridged cup to pour to. Then he filled the rest with tap water and handed it to me. Seemed like a legit way to measure. As I was about to drink it he told me in his thick accent, “By the way, this is going to taste, eh, very bad”. Ah, thanks for the heads up. This is going to be a chug situation then. I threw it back and chugged as fast as possible. When I resurfaced I could taste the potent remnants and they made me shudder. Nasty stuff. I turned toward the trash to throw away the cup when he stopped me, “Oh no, one more!” he said with a smile. Really dude? You couldn’t have picked a bigger cup or something? So he did his sketchy measuring system again and I chugged another gross mixture of chemicals. (I don’t know if it was Iodine based or the barium-sulfate)

            In the next room was a large donut shaped machine, with a bed that ran through it. They stuck me (and got it on the second time, woohoo!) in order to later inject an intravenous contrast dye which would allow them to get a better picture of what was going on inside my body. They went into another room and began directing the machine from afar. A loud voice spoke over the stereo system (an English translation!) and told me what to do. As I passed through the spinning donut, the voice would direct me when to hold my breath and when I was permitted to breath again. After a few rounds of this the Italian medic’s voice came through the speakers saying not to be alarmed, but they were now going to inject the contrast media and that I should do my best not to move. Don’t be alarmed? Okay… thanks. It was odd, lying there waiting, and not sure what I was anticipating. Then I felt it. Like a wave of fire it quickly flowed through me, starting in my left arm and washing over me. It was an odd and creepy sensation, but I successfully remained motionless as the donut began to spin again and they did the next series of tests. Once everything was complete he told me to drink as much water as possible in order to flush my system.

            It would be some time before we got the results, but that was fine by me. We were leaving on a rather spur of the moment vacation to Thailand. Hubby and I needed a change of pace, and as our anniversary was at the end of August we had attempted to plan a trip to somewhere else in Europe. These planning attempts fell short, as we were having difficulty deciding where to go and figuring out all the minor details in between. Finally my hubby suggested we go and visit his dad and step-mom in Thailand. He hadn’t seen them for years and our son and I had never met them in person, only via video chat. This seemed like a good idea, and so we skyped them and asked if they would happen to be available for visitors at the end of the month. His dad said they were and he offered to fly us there. That definitely solidified our plans and we got to spend two weeks far away in Thailand visiting with family and not going to a single doctor’s appointment!

            As soon as we had returned, however, it was back down to business. Less than two days after our arrival back in Italy, on September 13^th, we were in the waiting room at the surgical department, anticipating the results of the CT scan and ultrasound they had done before we had left. I was rather certain what she would tell us, and I had my prepared list of follow-up questions in my iPhone. Perhaps it was just a good hunch, perhaps it was in part the ultrasound tech’s reaction to scanning my lymph nodes, or perhaps it was the fact that they didn’t seem right all along, but whatever the reasons, I was fairly certain my cancer was still alive and well. I asked my hubby if he had anything he was interested in asking; he responded no. He’s my opposite in that he’s an “arrive and just go with it” type and figure things out from there, where as I like to be planned out and prepared. It makes vacations interesting at times because I like to have a planned itinerary and daily schedule so I know what to expect and can make plans, where as he will just show up and see what happens. However I suppose these differences are a good thing, because then we can always have two different approaches when it comes to situations. So there we sat, him ready to see what happened next and me with a very good idea of what would come next and my list of questions in hand.

            After a fire drill extended our wait we finally got in to see her. She held our LO as she often likes to do, and ushered us into her office where she promptly closed the door behind us. It was then that my strong hunch became 100% certainty. I’d had meetings with her nearly every week since my surgery, and never once had she closed the door. It was always left open as we discussed my lab results or what have you and people would stop by and coo at our baby. This was a very good indicator that we were going to have a serious discussion.

            She attempted some small talk as a sort of icebreaker I guess, asked how our vacation went. She clarified that it was family we had in Thailand and we said yes. She then asked whereabouts the rest of our family lived and I could see she was starting to mine information and bridge from the small talk phase. She then took a breath and dove into the meat of our meeting. “Well the results came back…” I nodded, trying to encourage her on. I wondered how many times she had had to do this, if ever. As a surgeon, normally people are diagnosed with a cancer or what have you and then sent to her for removal. However, since my surgery she had become the primary care manager of my case and she was the one who had to inform me of the not so good news. All around her office wall were pictures of her children and grandchildren. She had boasted their pictures many times and told me how her second grandson was the same age as our son, likely another reason why she enjoyed holding him on each of our appointments. Her children are around the same age as my husband and I, and I believe she likely sees us that way, as children and grandchildren. I felt badly for her and how difficult this must be.

        

    She informed me that the tests showed I had enlarged lymph nodes in the neck, which looked “suspicious”. (Back to that word again? I knew the dance this time, suspicious meaning, cancerous) It showed that the cancer had spread and there was a large mass in my chest and a spot on my lungs. She stopped here and glanced up at us, waiting for a reaction. So I began my list of questions.

“Does this mean I have Lymphoma?”

-       “No, it’s still thyroid cancer it has simply spread to other locations.”

“Since it has metastasized, does this put me at stage…”

-       “stage IV yes. The lung is considered a distant location from the neck so you are at stage IV.”

I asked her about before, when she said it was highly unlikely that there was any more cancer left and now they have found it has spread all over, why is that?

She smiled sadly and said, “Because you’re lucky”. (And for the record, I asked if had I chosen to do the RAI treatment if that would have made a difference. She said no, as they had not known it would not have been the right dosage and they wouldn’t have gotten everything. So I’m thankful I turned down the Radioactive Iodine treatment!)

“And what is the recommended course of action now?” I asked.

She told me that further surgery would be needed. They would need to do a “larger dissection of me”. (Dissection of me? wow, there weren’t any euphemisms for dissection you could have thrown in instead there Doc?? I was in biology for a time, I considered majoring in it. I dissected all sorts of things, including a cadaver. And while that’s all cool for the bio student, personally I don’t want to volunteer to be the disectee…) As she spoke she indicated with her fingers where they would likely slice me open to do the larger “dissection”. It looked like a partial decapitation (oh my, I was going to be Nearly-Headless Nick!) or a large capital letter “I” starting with a large slice running from ear to ear under my jaw bone where the lymph nodes were, a slice down the middle of my neck and connecting at the bottom to a line where the larger mass in my chest had formed. She said they would need to take out the rest of my thyroid (what, re-slice me for that fingernail sized piece you left in? awesome…). She said following surgery would be chemo and radiation. All these things I had expected, more or less. I had expected more cancer, though I didn’t know where, and that these would be the recommended courses of action. What she said next, however, I didn’t fully anticipate, though I should have.

She said that the base hospital couldn’t support those needs, and that we would be emergency moved back to the states, relocated to a base somewhere near a hospital that would fit our needs. This needed to happen in the next two-three weeks maximum, then I would begin further surgeries and the chemo and radiation as soon as possible. Yikes! Bombs began to fall.

Picture being super exhausted, and then someone comes up and tells you that you need to pack up and move OVERSEAS in the next two weeks with your infant and hubby in tow. It takes two months for a household goods shipment to arrive at a new location. This means we would spend the next two months “bed hopping”, from military sponsored hotels and the like as we waited for our goods to come in. Shoot, no crib for our son, living out of a duffel bag again. We would have to house hunt again, and move in quickly. We would also need to find a hospital that had a genetic specialist that could take on his PKU condition as well as an oncologist for me near a base that had my husband’s career field! (Not all air force bases have the same jets etc, and he is specific to one kind) In all likely hood he would be the first to get shafted, and they would force cross train him into a new career so we would be able to find a base that fit the options for our son and I.

Moving bases also means starting all over again, with no one you know at the new location. I recall moving here to Italy. Our son was born 4 weeks after we arrived, I hadn’t even gotten to meet all of his doctors! We found and moved into our house a week before he arrived, and our furniture was brought to us hours before he showed up. Then you’re in the hospital with a new baby and no one to come visit you and celebrate with you, much less help you unpack! (Okay, I take that back, we got one visitor. Our sponsor’s wife came in to see us! She was really the only person we knew at the time) It would be like that all over again. You’d be in the hospital as they ran tests all over again on the baby (because new doctors always want to do it for themselves and usually seem to disregard the results all the other doctors got), and then you’d be undergoing surgeries and chemo and radiation and there would be no one there you knew to help out. No one you trusted to watch your child, no one to help out and bring you a meal when in need or even stop by and see how you’re doing! When our son arrived there was only our one friend, a few months later when I had my surgery I had made more friends and people came to visit me, helped take care of our LO, brought us meals for a week, and even offered to help me clean the house and run errands! Fast forward to now where we’ve been here 9 months and have solid groups of friends. The past weekend I have been blessed with more people than I can keep track of offering to help me and my family in any they can, people I know and trust with my baby, people who offered to make us all Organic meals and come clean our house! I have been blessed with an amazing support group here, to uproot and move to a completely new place and forgo all the help being offered to me in this time of need seems like a crazy terrible idea!

 The stresses of restarting doctors and procedures with our son’s condition seemed daunting as well. We had an excellent system in place with the Italians, and mailing in his blood weekly is no hardship on us. The Americans work differently and would want us to come in and have his blood and labs drawn professionally weekly as well as redoing all the initial tests and dosages. So much for trying to focus on my own health…

Aside from all these stressful details was the fact that I realized I was very uncomfortable with the treatment options. I had begun to feel a growing guilt for getting the surgery in the first place. Life had seemed wildly out of control since then, and I had the nagging feeling that I had missed something. I asked the surgeon if going through these procedures would cure me. She seemed confused by the word cure, and explained that there is a high survival rate for patients who do the recommended procedure. However this is not what I was asking. I wanted to know if I would be cured. Don’t get me wrong, modern medicine has made some fantastic advancements, and my son has a condition that without medication, would result in his being intellectually and developmentally challenged. The medicine he takes daily frees him from the bonds of PKU. However, I don’t believe this is the case with all modern medicine. At one time it was fashionable to bleed people of their sickness. We know now this is not a good idea, as there are healers in our blood that help fight off the sickness. Cancer treatment seems similar to me. They want to go in and cut it out (surgery), poison it out (chemo), and burn it out (radiation) but these never get at the root, the cause of the problem. They will devastate my entire body and then make me rebuild from the bottom again once everything had been annihilated. It’s like finding a weed or fungus spreading in your garden and choosing to poison the entire group and start over, hoping when you rebuild it doesn’t happen again. This option didn’t make sense to me, and it most certainly was not a cure.  

This is one of the many books we've been
using, and I think it has been an excellent
 and helpful read. I definitely recommend
getting it! Even if you don't have cancer,
chances are someone you know will someday.

If God were ever giving me a do over, this seemed like it, and the stakes were higher this time, so I had better make the right decision. This energized me like nothing else. I was getting a do over!!!

I once again asked her if there were any alternatives to this. She gave me the same tired “This is the recommended course of action” response. I knew that would be what she said, but I had to make her say it anyway. And we ended with my final question, “What would you do if this were your cancer?” I think this is when she knew where I would be going with my treatment. She had grown to know me fairly well over the past few months, and I’m sure she already suspected I would have certain inclinations. She looked down at our baby in her lap and kissed him on his head. “I would do whatever the doctors told me to do.” She looked up and continued slowly, “Because I have a husband and a sweet little boy who need me”. I smiled and nodded. We scheduled a follow-up for the following Tuesday, September 17^th, in order to discuss the details of what to do next.

I already knew roughly what I wanted to do, it was only a matter of strategically breaking it to the doctors in a manner that would hopefully gain us their support and permission to remain here in Italy.

My hubby and I spent the next four days deep in research, prayer, and deliberation. We informed our family and friends and were blessed with overwhelming mounds of support, love, and prayer! I had friends from around the world offer to hop on the next plane and be there to help me if needed. People who are friends of friends of friends reached out to me and told me they were thinking and praying for me. The selfless love and care of everyone around me has been astounding and encouraging. It was like an “It’s a Wonderful Life” moment, when you know you’re loved, but then when really in need, you are shown just how much you are loved and cared for. It has been an emboldening blessing, and I am quite certain that everyone’s prayers are working.

We found a lot of information and spoke with many people that encouraged us and keep us believing we’re on the right track. I also phoned a Cancer consulting agency in the states and they told me that due to my age, they have a different ranking system and I would only be considered stage II. This sounds better than IV, however it is still the last and final stage for someone my age with cancer, and it still needs to be fixed ASAP!

On Tuesday we went in to meet with her again. I had been up late the night before, preparing a mini persuasive speech to present to her. It was colored coded by points, printed out, and placed in my pocket for reference, if needed. The anxiety built as she was delayed in a meeting and we didn’t get to meet with her for over two hours after the designated appointment time. I presented our case, our line of thinking and desires, and finally broke it to her that we would like to seek alternative cures instead of the common surgery, chemo, and radiation, route.

She told me that although she was disappointed, she had rather expected something like this from us. She said she was willing to help us however she could, and offered to run tests so we could track our progress. She did ask, however, that if next year we ran tests and the results showed we had made no progress or in fact gotten worse, would we reconsider our options? We told her we would. This deal seemed to work for us both and we rejoiced upon leaving her office. Hallelujah! We had been given a do over and we were choosing an alternate path, taking a leap of faith and trusting in God to pull us through. AND, we would get to remain here in Italy.

This my friends, this was the moment that I should I have taken months before. The moment were I grabbed my hat and leapt off of the fast train I had boarded. The train where nothing was within my control or complete understanding, where I would never be completely informed or completely finished. A train speeding along with numerous unpredictable side effects. Unlike the frog in the boiling pot of water, I wasn't cooked just yet. Maybe burned and overheated, but not cooked. I took my leap of faith and flew from the train. However, despite this refreshing, relieving feeling of having left the circus train I was on, I have found that my leap has landed me in a desert where everything is dying. I still have a lot of work to do, the most important factor of course is that I need to heal! But it is in my hands now, and no one else’s, and I can turn around and give it over to God. No more run-arounds from half-witted techs, no more daily or weekly doctor appointments leaving me with more questions than answers. I have a plan and I know where I’m going, and that brings me hope.

I keep in mind that there is always the chance, the small chance that I am in that small percentage. The small percentage whose name has appeared on heaven’s roll call and are being summoned home. The Doc did say I was "lucky" after all, did she not? But until I am certain I am being summoned home, I will wage the war with impending death until I am set free. 

My little one and I <3 (Photo by Wibbly Wobbly Photography)

Whew, I believe we are finally caught up! It took me days to complete this post so thank you for taking the time to read it! I apologize for not updating my health status better/more frequently, but now you have everything we’ve got up until now. I plan on posting the alternative methods we’re using and our progress when I next find the time to do that, so check back later for that. And as always, your thoughts and prayers are much appreciated! Thank you for the love!!! <3

Here are some links that you may find interesting/beneficial:
 

• Book: Cancer, Step Outside the Box
• Documentary on Cancer Alternatives 
• Cancer Alternative Methods Website