After weeks of medical testing, and some scary and lonely moments, my doctor has now come to the conclusion that I am *most likely* CANCER-FREE! This is about as much certainty as can be expected at this point…possibly after a year of good results we will be able to say it with 100% certainty. However, one of the lessons that I’ve learned from dealing with cancer, is how to live with uncertainty. This really is a metaphor for life in general…life can be an unpredictable rollercoaster sometimes. My relief is still sinking in and my fear is gradually being replaced with such profound joy and gratefulness. I’m not resting on any laurels at all…there is always a chance of persistent or recurrent disease. And, of course, there is a higher risk for a 2nd cancer somewhere else…but reaching this milestone is a battle won. Cancer takes away enough from us as it is…I’m not going to let it take away my celebration and joy of relishing this good news. In fact, that 8K is tomorrow, and I’m going to run it with all my heart. I hope everyone else has a joyous weekend as well! And remember…life is beautiful!
Posts tagged ‘cancer’
So, as I was thinking about my recent fun and successful 10K race and my desire to run more races and even work my way up to a half marathon, I was thinking more about WHY I am running. Of course, there’s the obvious health factor. Not only the cardiovascular benefits, but keeping weight down, boosting the immune system, and (hopefully) minimizing my chances of a recurrence or another kind of cancer (after my thyroid cancer and radiation, I’m at higher risk). However, continuing with the cancer theme, as one goes through the diagnosis and treatment phases for a serious condition like cancer, one feels dehumanized. I became a piece of meat, a pin cushion, a set of lab numbers, an appointment slot, another seat in the oncology waiting room…This isn’t to say that I didn’t like the care from my doctors and nurses overall. In this situation, it’s something that can’t really be helped, when you’re in a sterile environment (both literally and figuratively as you’re sitting in a clean, white medical room without personality), focusing on your bodily functions and measurements, and not on your soul, mind, or personality. While running does focus on your body, it also focuses on your other aspects of humanity as well – your mind, your determination, your drive, your goals, your enjoyment of your surroundings, your musical taste as you listen to your choice in music, etc. It is a way to control your body after a time of losing control and also rejoining your body with your mind and soul.
Also, having racing events to work towards can get you through the tough times. In the near future, I will be getting more medical tests done and seeing doctors to try to decipher if my cancer has been successfully and completely treated. I will admit I am nervous about this and not looking forward to it (although I do blissfully dream of hearing the words “You are cancer-free!”) However, I’m thinking of signing up for an 8K race that’s 2 days after a big medical appointment. Is this a good thing? Well, I figure, if I receive bad news during the prior medical appointment, this will be a way for me to cope and not dwell on the bad news. If the appointment goes well, it will be a joyous way for me to celebrate! I even may sign up for a Half Marathon in the Fall, not knowing for sure if I will need any more medical treatment (RAI or surgery) during that time period. Worst case scenario – I’m out 70 bucks if I can’t run the race. Best case – I stay in top physical shape, with this goal keeping my mind busy through the tough times, and I reach the goal of completing a Half Marathon.
Running is also good at forcing one to seize the day and make the most of each moment, which is something that many cancer patients learn. When life is short (and it is for everyone, not just cancer patients), make the most of what time we’ve got. Running involves counting minutes (even seconds), timing oneself, and celebrating the big finish – what a great way to live in the moment!!
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!
My latest endeavor of my anti-cancer lifestyle is that I have started running. Many factors seem to have come together, leading towards this, including family members and neighbors who have been running races (even marathons!) and, of course, my diagnosis this year. During my cancer treatment, when I needed (and wanted) to just rest, I would longingly look at the latest Athleta catalog that arrived in the mail and I would yearn for my treatment to be over, so I could start running like those women. I wanted to look like those tough-looking girls. Not ‘tough’, as in ‘steroids’ and ‘I’m-going-to-kick-your-butt’, but ‘tough’, as in ‘I can handle whatever obstacles come my way and run my way right through them’.
Yesterday evening, I ran my first 5K (3.1 miles) without stopping or walking. And I even felt good. Maybe it was due to my first dose of the recreational runner’s drug: endorphins.
I’ve never been a runner, although my 8th grade science teacher kept telling me that I would make a great runner. But since when does a 12-year-old listen to their teacher’s lifestyle suggestions? I have always been a walker, hiker and biker. But when it came to running, I just shuddered at the thought. The first run I attempted on the pavement lasted about 1/4 mile, before I had to slow down and walk. That was just a couple months ago, and I had radiation and isolation in the meantime. I figure that if I could make it through cancer treatment and my accompanying autoimmune disease I had for years (also my dad’s illness and passing during the same time period), that I can do just about anything that I want to do. Running should be no exception.
So, I run because it may help keep cancer, inflammation, and heart disease away. I run because I can, and who knows what the future brings. I run because it feels great (after the first aching mile or so). And I run because I want to look like a bad-a** like those girls in the catalog. I’m running for my life.
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!
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.
So, I’m here today to vent….I guess a blog is as good a place for that as any… Venting wasn’t my intention when I started this ‘artistic living’ blog, but I guess it’s just one of those unexpected twists that are part of life. It does affect how ‘artistic’ I’ve been feeling for the last couple of weeks and it certainly affects ‘living’. So I deem it appropo.
Without any symptoms or expectation of anything wrong, during a routine checkup, my doc found a lump on my thyroid. A bloodtest, a camera stuck down my nose/throat, and now an ultrasound has revealed two medium-sized lumps with some (not all) suspicious characteristics on the thyroid. Well, before two weeks ago, I knew virtually nothing about the thyroid, except that it’s an endocrine gland in the neck area and that it can help control weight, if functioning well. Well, now, medical terms such as isoechoic, nodule, hypoechoic, calcification, and thyroidectomy are part of my common vocabulary. The Internet can be both a helpful and a scary place, especially if someone has been suddenly diagnosed with a disorder. It is beneficial to be informed when undergoing healthcare and medical procedures, however, too much info can be overwhelming and detrimental, I am finding. Studying other people’s ultrasound images isn’t going to help me (unless I change career paths and decide to become a radiologist!) and hearing every possible percentage risk associated with every term is getting to be too much. I’ve been told that chances are still decent that the condition is benign. But anytime one considers the possibility of the ‘C’ word is even 10-25% likely, that’s all one focuses on. I think I’ve been informed to the extent that I know what my course of action should be, but I need to keep maintaining a normal life, until the day I possibly have to go in for surgery.
Next step: Ultrasound guided Fine Needle Aspiration (FNA) Biopsy. I’m starting to experience the frustrations of the modern medical system – Make appointment. Wait. Find out small amount of info. Wait. Make another appointment. Wait. Find out small amount of info. Wait. Wait. Wait. So now I’m waiting to hear when my FNA will be. Then I will wait for the procedure to be done. Then I will wait for results. Then I will wait for appointment to find out results. You get the picture.
So now I plan to spend a weekend off the Internet and enjoy the more artistic side of life. Thanks for letting me vent.