THE ARTISTIC LIFE – Living the creative life in everything we do

Posts tagged ‘papillary’

Spread Thyroid Awareness All Year Round

Thyroid Cancer Survivor and Awareness Shirts

On a previous post I talked about my thyroid cancer survivor and awareness shirts I designed in honor of Thyroid Cancer Awareness Month. Well, September is long gone, but we should spread the awareness all year round.

I’ve made a couple more designs since then, one that goes well on light and white t-shirts and another design which is less feminine, for male thyroid cancer survivors or loved ones. Check them out here. As before, 10% of net proceeds go to ThyCa: Thyroid Cancer Survivors Association. It might even make a good holiday gift for that survivor in your life, to show you appreciate the struggles and obstacles they have overcome. If you know a survivor, pass it on and help spread the awareness!

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RAI of Hope

My nervously awaited Radioactive Iodine (RAI) treatment phase is almost over (at least for now – maybe forever?!) This treatment is indicated for many Differentiated Thyroid Cancer patients after thyroidectomy, and with my 11 malignant neck lymph nodes found at surgery, I was due for a fairly hefty dose (150 mci). As with most aspects of my cancer treatment, I researched a great deal about this treatment and its repercussions. Of course,  a lot of what I read on the Internet was not positive. The long-term repercussions in my case are still unknown, as certain side effects may not even develop for weeks or months. This process started with an endocrinologist appointment, who then made an appointment with their affiliated Radiation Oncology department. Rad Onc would be administering the RAI. For 2 weeks prior to the RAI, I had to go on a Low Iodine Diet (LID), which, for me, is one of the worst parts of the whole ordeal. Being on a healthy diet for years, due to my high cholesterol, has become part of my normal routine, and I am used to controlling what I eat for health reasons, so I thought this would be relatively easy. I was wrong. Although I appreciate the wonderful creative recipes that ThyCa.org provides, and somewhat enjoyed a couple of these recipes (the griddle cakes and chili, in particular), food without dairy just isn’t very satisfying. Also, with my extensive online research, I learned of the varying opinions and controversies regarding the diet, and I grew more worried that what I was eating actually might contain a lot of iodine. Or maybe not. In the end, I hardly ate anything, for fear that it was silently laden with iodine, which might interfere with my treatment. The premise of the diet (and according to most doctors, it does work) is that if I starve my remnant thyroid cells of iodine, these same cells will absorb the radioiodine like a sponge and the treatment will work better. The goal is for the RAI to ablate the thyroid remnants and kill any remaining thyroid cancer  cells wherever they may be in the body. So, during the 16 days I was on this diet, I went to a wedding, a tailgate, and a cookout…where the only things I could eat were carrot sticks and cucumber slices (without dressing, of course). It got to the point where everything just made me queasy because nothing was appetizing. I lost 6 pounds in just the first week. The countdown towards RAI (and the end of the diet) began.

The RAI week is very busy for the patient. On both Monday and Tuesday mornings, I received some blood tests and Thyrogen shots at the hospital. I was “fortunate” enough to find some Thyrogen. I also didn’t take “no” for an answer when my doctor and hospital told me that they couldn’t get any Thyrogen for me until 2012…you see, there’s a severe worldwide shortage of Thyrogen. Thyrogen, without getting too technical, prepares the body for the RAI, so that the treatment works. The alternative to Thyrogen or the “old-fashioned way” is to withdraw from our necessary thyroid hormone pills for a few weeks and become severely hypothyroid. Many people have awful side effects from this withdrawal, which may take weeks or months for the body to recover from. I work full-time and commute to work (driving could even become dangerous under this condition) so I did not want this option. So, when my doctor told me the bad news about not getting the Thyrogen, I started making phone calls. I called my insurance company to find out who their affiliated specialty pharmacy is. I contacted this pharmacy, who didn’t have any Thyrogen, but was aware of the shortage and suggested I call local retail pharmacies to see if anyone still had this important drug in stock. Thyrogen has a 3-year shelf life, so it was possible that some was sitting in a fridge somewhere in a local pharmacy. I called a local Walgreens and they did not have any. I asked if they could look up in their computer system to see if any Walgreens in the vicinity did have any in stock. He said that the system wasn’t always accurate, but it was worth a shot. He gave me a few phone numbers and I started calling. Finally, the last phone number the pharmacist gave me was the golden ticket! They did have Thyrogen in stock, so I left work with my insulated lunchbag, sped to the Walgreens (about 40 minutes away), drove home to place it safely in our fridge, and returned to work jubilantly.

On Wednesday, both Curt and I drove separately to the hospital, where I would get more bloodwork, then, finally, the RAI. Despite the crazy traffic heading to the hospital (it took us about an hour-and-a-half instead of a half hour), we arrived early. The radiation oncologist and nuclear medicine doctor both went over the safety precautions again and answered questions. Curt needed to leave the patient room and the doctor wheeled in a cart. On this cart was a heavy looking lead box and a Geiger counter. Inside the lead box was a lead cannister. Inside the lead cannister (kind of like Russian dolls) was the actual pill. We could not touch the pill, so she placed it in a cup. I was told to very quickly swallow this pill and use as much water as I  needed. I normally have a hard time swallowing large pills and was a little nervous about this for days. What if this highly radioactive pill gets stuck in my throat?? So, I knew what I needed to do…just chug the pill with no regrets as if my life depended on it. Maybe it does. I’ve never swallowed a pill so fast in my life. The big pill just slid down my throat and I drank 2 cups of water to make sure it was down. The doc measured my neck with a Geiger Counter and said “It’s down. Good. Now go!” The docs then scattered, as they didn’t want to be around “Chernobyl on Legs”…so, with my hands still trembling, I left the room, called to Curt in the waiting room, and we hurriedly left. Curt needed to stay 6 feet away from me and we drove home separately. I had taken prescription strength anti-nausea meds, and, luckily, felt fine. I didn’t feel radioactive at all.

Now the isolation…I was given restrictions that basically meant I needed to be alone for 7 days due to the radiation I was emitting. I needed to stay 6 feet away from people (and pets), sleep in my own bed, cook my own food, use a separate bathroom, flush twice, etc. The rules go on and on. There is also a lot of controversy and variation from hospital to hospital on these restrictions. In many hospitals, I would’ve been kept in the hospital for a few days, until I was less radioactive. In a way, that would’ve been easier. At first, it was lonely, frustrating, and stressful. But, by the 4th day or so, I was almost enjoying the “me” time alone in the attic! For the first time in a long time, I had time to read, sketch, learn new guitar chords, online shop, henna my hair. I Photoshopped the photos I took for a wedding, exercised, sang, researched new music on YouTube, texted, social networked…the time actually went pretty quickly and, here I am, on the last day of isolation! There is a possibility I will need this treatment again in a year. If so, I’m not looking forward to the diet, bloodwork, shots, radiation, possible side effects…but I won’t dread the isolation so much!

Now my hope is that this RAI will cure my cancer….

Thyroid Cancer Awareness Survivor T-Shirts

Thyroid Cancer T Shirt

Thyroid Cancer Survivor Butterfly T-Shirt to help raise awareness

Although, still in the midst of my treatment for papillary thyroid cancer, in the meantime I’m getting impatient about finding something useful to do about thyroid cancer awareness. When my treatment is finished (at least for now), I’d like to start a support group…however, until then, I thought I could design thyroid cancer awareness t-shirts. I already had a Cafe Press account, so, to hit the ground running, I uploaded a couple designs to my CP page.

10% of  net proceeds will be donated to ThyCa: Thyroid Cancer Survivors Association. Spread the word, not the cancer! Spreading awareness of the disease can lead to earlier detection in patients (like myself) who may not have known to have their neck checked. Awareness also leads to greater funding in ThyCa research…which may lead to improved treatments and maybe even, a cure! Roughly 1500-1800 people die every year of Thyroid Cancer and countless others have multiple surgeries and radiation treatments for stubborn cases of ThyCa.

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My Surgery Story

Forgive me as I’ve been offline from my blog for a bit, as I prepared (mentally, emotionally and logistically) for my thyroid cancer surgery and am now recovering from it. Having a major surgery has been one of my greatest fears in life, so dealing with this event was quite challenging for me. I was glad that I researched hospitals and care for thyroid cancer, and knew even before I was diagnosed, that I would want to have this surgery performed at Johns Hopkins Hospital. If the #1 hospital (and #1 Ear, Nose, Throat department) in the country, according to US News & World Reports, was located a mere 4 hour drive away from my home, why not? This fact alone eased my mind a bit, as I figured that I would be in good hands, and that they could handle any unusual circumstances, should they come up. I am still a bit cynical as far as the world of medicine (and insurance), but this was about as good as it gets, as far as up-to-date research and quality surgeons for this “rare” but fast-growing disease in the population.

So, on Sunday, July 17, Curt and I headed up to Baltimore from Carrollton, VA. We checked into the hotel (props to the Admiral Fell Inn) and decided to make the best of our time in this city by doing some sightseeing. I wasn’t feeling ill yet (it was before the biopsy and surgery), just nervous, but was determined to make the best of each day. So, we were off to the National Aquarium. We’d been to Fell’s Point (this place might still have the most bars-per-capita in the US?!?) before, but surprisingly not the Inner Harbor. There was some confusion as to finding the water taxi ticket office. After walking back and forth and even asking the police, we walked into a tourism office, where the lady said we could pay by check as we get on the boat. Apparently that was bad info – they stopped taking checks. Luckily, the guy on the taxi let us climb aboard anyway, with the promise that we’d be paying for a return trip. Spent the afternoon at the aquarium, then met Curt’s cousin at a pub, before heading to Obrycki’s – a famous Baltimore crabhouse. We did some damage (literally– a table full of crabs was destroyed, not to mention the broken glass on the floor) and later called it a night. The last night with a whole, undamaged (albeit diseased) thyroid.

Monday morning we went to the Blue Moon Café, which had just been featured on Diners, Drive-Ins, and Dives that week, for an excellent tasty breakfast (love their omelets!). We then walked to the hospital, located about a mile away. This was biopsy time. I wasn’t too nervous about the Fine Needle Aspiration (FNA) Biopsy for my lymph node, as I already made it through FNA Biopsies of my thyroid with flying colors. The needle doesn’t really hurt that much, and it’s pretty quick. However, I didn’t know that the whole process on this day would end up taking almost as long as my actual surgery! I was originally just there to biopsy one suspicious lymph node. This wasn’t exactly good news – but I figured that metastasis in just one lymph node is not that bad. However (and kudos to the meticulous and professional radiologists there!), these professional decided to start from scratch with thorough ultrasounds of my entire neck (I had already had 3 previous ultrasounds performed – but none were this meticulous). They ended up doing 3 biopsies. I counted a total of 15 needle pokes, including the lidocaine shots. This process may have just minimized my future surgery and treatments! It was very nerve-wracking as they worriedly found more and more lymph nodes that did not look right. They eventually drew a map diagram of all of the lymph nodes which looked suspicious via U/S. The doctor was very concerned and asked me if my surgeon was planning on performing a radical neck dissection. Well, this freaked me out! I had read (maybe too much) about these radical neck dissections, and they are extensive 8-hour surgeries, causing months off from work, requiring physical therapy, and resulting in lots of pain, not to mention the ear-to-ear scar. That afternoon, I made the mistake of reading some online document stating that these surgeries had up to a 17% mortality rate. Now, if you are facing a radical neck dissection, I do not know if this is correct. This document was dated to the 1990s and may have accounted for neck surgeries for other more invasive cancers, rather than thyroid carcinomas. Anyway, I had been mentally prepared for a thyroidectomy, but was not ready for this! Not having the biopsy results yet, or having talked to my surgeon, I just did not know what kind of surgery I was having the next morning. And that’s scary.

I did not sleep that night. It is highly recommended to sleep and be well-rested before a major surgery. Recommendation was noted, but it’s easier said than done. I was still scared about the “unknown surgery” that I would be having…would my entire neck be sliced up that day???? Was this the end of a normal life? Was this the end of….life??? So, the alarm clock rang at 4:30 am (good thing I set this alarm on my cell phone, as the hotel desk never called!!), but it did not wake me up. Because I never went to sleep. Took an antibacterial shower, applied NO make-up (gasp!!), and brushed my hair – was ready to go! Let’s get this over with!

So, we took a taxi and headed to the Kimmel Cancer Center Weinberg building. We were the only ones walking into the quiet building at this hour. It was so quiet that even the guard at the desk had nodded off. We woke him up (sorry!) to ask what floor we needed to arrive at. Headed up the elevator and took seats.  Waited quietly but nervously for a short time and was then called to the desk “All surgery patients please follow me!”. Nervously jumped up, left Curt to sit with his iPad, and followed the group. We were taken around the corner to a long empty hallway. I felt like I was part of a herd of cattle in a corral, blindly being lead to slaughter. We turned another corner, where the pre-op area was. Each of us was assigned to a numbered little pre-op “cubby hole”, with an optional curtain providing partial privacy. I was instructed to pee into a cup, take off all my clothes, and put the gown and surgery cap on. Shortly after, a stream of various nurses and doctors came in to question me and prepare me. Of note, was the funny guy who inserted my IV. He made a lot of jokes and was a former sailor who had been stationed in Norfolk for awhile, and his humorous manner helped put me at ease. The IV insertion didn’t even really hurt (more than a pinch) and I was already receiving some fluids in preparation. Eventually, they let Curt come see me, which was a relief, because I thought that maybe I wasn’t able to say goodbye to him before the operation. Curt stayed with me as anesthesiologists and my surgeon visited and talked with me. I was glad to see my surgeon, because I expressed my concerns about my lymph node metastasis and not knowing how extensive my surgery will be. He said the final results were not in yet (and may not be until during or after the surgery), but that he’d look at the radiologists’ report to help determine the extent of the surgery. I signed a form with an addendum of a possible neck dissection, if necessary. However, he said that he did not do extensive radical neck dissections, including removing muscles, nerves, and veins. He eased my worry of having the possibly dangerous, extreme version of the surgery I was scared about, and said that what he would do (removing some lymph nodes) probably wouldn’t extend the recovery time by a whole lot. That made us feel a bit better!! Shortly after, it was time to say goodbye. After about 3 almost-teary goodbye kisses with Curt, they wheeled me away. The next phase becomes very fuzzy in my memory, as fear and drugs were probably influencing my brain at that time. Someone mentioned administering the “I don’t care” drug in my IV that would make me feel as if I had about four glasses of wine. That stuff was great! I remember people placing EKG nodes on my bare chest (my gown opened in the front) and thinking “I don’t care!!” I remember being moved to the operating table and looking up at the bright lights and thinking “I don’t care!!” I think I even tried cracking a joke, because I DIDN’T CARE!!! One of the last things I remember before going under was someone commenting “She still has her underwear on!!” Turns out, I had forgotten, in my nervousness, to remove them. But somehow I woke up with them removed. Hmmm. Anyway, the last thing I remember was someone saying “Breathe deeply”.

For four hours and fifteen minutes, there was NOTHINGNESS. Then I remember a voice (maybe the same one?) saying “You’re all done with surgery! Wake up! You did great!!”. I opened my eyes to a few blurry people standing at the edge of my bed looking at me. They said I was doing great, although I seemed to remember someone saying my heart rate was 130. That seems very high, but maybe they were talking about someone else. I remembered feeling pain and having trouble getting deep breaths. I told them it was hard to breathe, but they said my vitals were fine. One doc thought it might be anxiety-related. Someone else mentioned my asthma. So, they decided to administer albuterol, and lo and behold, I was breathing better. My stressed out body was probably having an asthma attack. Despite this initial trouble, I was just so happy that I woke up, was alive, and that surgery was over! I did it!!! After everything normalized, Curt came in to see me. Once again, happiness!

After awhile in recovery, I was finally wheeled to my room where I was rather comfortable. All of the rooms at the Weinberg building are private, so I enjoyed the privacy and the space. Nurses were regularly coming in to check on me and do tests, but I was still pretty happy through all of it. After a few hours, I needed to use the restroom, so the nurse thought it would be a good idea for me to try walking for the first time since surgery. They helped me up, and, without much privacy (you can expect to give that up when you enter the hospital), I aimed for “the hat” as the nurse called it – a plastic receptacle contained within the bowl. I don’t know why they call it a ‘hat’ because I don’t know anyone who would put that on their head. I guess they use this for urine testing. I didn’t ask. Just tried to concentrate enough to aim for the target. The strain of being vertical upset my stomach and, well, I got sick. They then laid me down again, and I later tried to drink some chicken broth (I was starving). This did not go over too well with my tummy, and, once again, I got sick. Not a fun thing, especially when one has 2 fresh Frankenstein-like incisions across one’s neck. So, my dinner consisted of a gourmet feast of….ginger ale. Yum.

I experienced my first night in a hospital. I was warned about the constant interruptions of testing, pokes, and questioning. I was glad I received this warning beforehand – otherwise I would’ve been pissed off. Will they stop waking me up and let me get some well-needed rest? After numerous shots, blood tests, questions, and check-ups, the morning arrived. Hopefully this will be the day that I get discharged! I was told that my calcium levels had been low during the night (this often happens after this surgery, due to the shock and possible removal of one or more parathyroid glands during the procedure). In my case, I still had 3 out of 4 parathyroids intact, but this could result in transient hypocalcaemia (fancy term for temporary low calcium in the blood). So, they needed to continue monitoring this situation and do at least one more calcium test before I could leave the hospital. I waited it out, ate a full breakfast (well, Curt helped me with the bacon) and got some more rest for a few hours. (As a sidenote, can you believe the hospital serves juice listing high fructose corn syrup as the 2nd ingredient? When will the medical world accept good nutrition as a part of good healthcare??) The last calcium test results were acceptable and I was free to leave by mid-afternoon! I was given a wheelchair (wasn’t ready to do all that walking yet) and Curt wheeled me to the pharmacy for my first prescription of Levothyroxine (my new thyroid in a bottle) and made arrangements with the free hotel shuttle. The shuttle took longer than expected and waiting outside in the heat in my wheelchair was very unpleasant. I just wanted to lie down again! I also didn’t enjoy being out in public with my lovely neck drain sticking out of my poor neck. I must’ve been a sorry sight. The drain plays an important role in recovering from this surgery, but it still looked disgusting. Poor Curt had to “strip” the drain 3x a day for 3 days, measure the fluid, and record the measurements. We even did this one night after Curt got home from a bar. That was messy.

The next couple of days/nights were painfully uncomfortable for me with fitful bouts of sleep and bad television on the limited channel selection at the hotel. It was hard to get the pillows stacked just right to be comfortable for my battered neck. I actually missed my hospital bed, because the elevated head of the hospital bed was indeed perfect for providing comfort to my neck. The hotel bed just wasn’t the same.

Three days after surgery, we returned to Johns Hopkins (the Outpatient Center this time) to finally remove my drain (Yay!). The nurse inspected my incision and, surprisingly, said everything looked good. That Frankenstein cut across my neck didn’t exactly fit my definition of “good”, but I suppose they see this sort of thing all the time. She then proceeded to snip the stitches that were holding my drain tube in place inside my neck. She was having difficulty, though, finding the last stitch. She called in another nurse who also had some problems. Turns out there was glue holding the stitches (and the drain) in the gaping hole in my neck. I became more nervous and Curt squeezed my hand. The nurse said not to worry, that they could take care of it. Sure enough, a minute later, they painfully yanked out the bulbous end of the tube that had been inside me. That hurt, so I squeezed Curt’s hand again. Curt said it looked awful and that if it were him, he would’ve cried. Surprisingly, the pain subsided in a couple minutes and we were on our way back to the hotel. We could leave Baltimore and head home!!!! The next morning, Curt (I still couldn’t drive) drove me (and my queasy stomach) home, thus ending our surgery week in Baltimore!

The ‘C’ Word

So, I finally found out the results of my testing and biopsies….papillary thyroid cancer. Yep, cancer. There’s a 90% certainty of this, but at that high percentage, it’s pretty much a given. My doctor was convinced and surgery is to follow. At this point I do not know the Stage or if it has spread.  I do know that being under 40 (barely), and even under 45 years of age means the prognosis is quite good. At this point I’m more worried about quality of life. There are a lot of horror stories out there on the Internet. Not so much about dying, but of living with constant fatigue, depression, hair loss, pain, the list goes on and on. There are a FEW good stories out there online. I just have to remember that many of the people who are posting in thyroid cancer forums are those that are still suffering and trying to find answers…the success stories are out there busy with their lives and aren’t on thyroid forums. I am trying to find a reason and a purpose for having this rare type of cancer (I’ve read that only about 1 in 10,000 people get it). I would like something good to come out of it. I will try to remember that I need to post my story during and after treatment. And if the results are successful, optimistic, and  NOT horrific…I especially need to post my positive story. There will be others like me that need to hear it.

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