My Thyroid Cancer Journey, part 2

Micrograph showing that the papillae in papill...

Micrograph showing that the papillae in papillary thyroid carcinoma are composed of cuboidal cells. H&E stain. (Photo credit: Wikipedia)

To continue from yesterday’s post, I had my thyroid out on March 7, 2007 because of papillary thyroid cancer that was confirmed the month prior.

March 25, 2007: Radioactive Iodine treatment day. Two days earlier I sent Scott and the kids away in the motor home to start vacation and to leave me alone, as the radioactive iodine treatment could make me be dangerous to the kids and their developing thyroids. The taking of the pill itself was no big deal, just weird. The pill comes in this big, iron box. The tech opens the bottle, careful not to touch the pill, and drops it in my hand and then the tech scurries behind protective glass and watches me swallow the pill. Then I’m sent on my merry way. I have to take precautions with my “waste”: flush twice, use only one set of dishes/cups that can be disposed of later, bedding has to be bagged for 2 weeks before washing, avoid close contact with people for 5 days. My only side effect was my salivary glands got very swollen and sore. It wasn’t horrible. I missed my family very, very much, so I spent a good amount of time in a depressive sleep.

April-September 2007: This was a very trying time for me as I adjusted to life without a thyroid trying to get my dose of thyroid medication right for me. I was so tired and so depressed all the time. Being hypothyroid was no joke. Thyroid medicine takes awhile to build up in your system… weeks, in fact, up to 6 weeks. My doctor was tired of hearing from me. I did blood tests every 3-4 weeks and my TSH just wouldn’t come down into the normal range. At one point, after months of being on a lot of thyroid medicine, my blood TSH was 137!! (The normal range is 2-12. My normal range for cancer suppression is under 2. And when I doing tests that call for my levels to be elevated, they just want them to be above 50.) So finally, after being on mega–doses of generic brand medicine, my doctor suggested I try name-brand Synthroid. A month after I switched, I started to feel normal again. I was told to only take name brand from now on.

September 2007 and March 2008: I have a nuclear thyroid scans to check if any cancer can be detected. It comes back negative.

August 2008: We have moved back to California and I am newly pregnant with my third baby. Early pregnancy sends my thyroid levels crazy. I feel horribly hypothyroid and none of my new doctors listen to me (they write it off as just normal early pregnancy symptoms) until my blood tests come back at 12.9. High TSH in early pregnancy can cause miscarriage. They pay attention now. I get a new endocrinologist who I like a trust a lot. She doesn’t really like that as a new post-cancer patient she can’t run her own tests on me because of my pregnancy, but she makes due and actually calls my Colorado doctor to get some information clarified. I love that she did that, especially considering how difficult my Colorado doctor was to get time with.

Februrary 2009:  Easton is born. After the initial pregnancy wonky-ness, my thyroid gives me no trouble.

Summer 2009: My blood levels start to concern my endocrinologist because the one they use as a thyroid cancer marker has been steadily rising. Because I am breastfeeding, I cannot do any of the nuclear tests. She has me do a CT scan instead. My thyroid area looks fine, but the CT scan picks up an abnormal sized thymus (some random gland that usually atrophies in adults). It would be exceedingly rare for it to be anything, but my doctor is concerned because it is such an odd thing to be enlarged. It ends up being nothing but causing a lot of drama and stress for me.

March 2010: I am finished breastfeeding and my doctor really wants me to do another Radioactive Iodine treatment. She is just concerned that my levels have continued to rise. She really wants to do a treatment to “knock it down” and keep me at a better baseline.

June 2010: Second Radioactive Iodine treatment. This time, because I have a baby, my doctor admits me to the hospital for three days so I don’t risk hurting his thyroid. After the 3 days in the hospital, I stay another 5 days at my parents house. That was a lonely time too.

August 2010: My levels did not drop at all and my doctor does not know why. She orders an MRI. It is negative. She is confident that I don’t have “bulk disease” (aka tumors) and that it is probably just my baseline. They can never get 100% of the thyroid removed from surgery and the RAI is supposed to kill any remaining thyroid. The tests they use as a “cancer marker” (thyroglobulin) is actually just testing how much thyroid you have at all, because the unique thing about thyroid cancer is that is typically only can regrow on thyroid tissue. And since some parts of your thyroid can regenerate, they like to use the RAI to zap it back down. Unfortunately, too many RAI treatments increase your risk for other cancers. After this last treatment got no results, I made the decision to not do another RAI unless there is more evidence that the cancer is back, not just microscopic thyroid tissue.

2011:  Everything is stable thyroid-wise. Just blood tests are done and 6 month doctor visits.

February – October 2012: Pregnancy number 4. Thyroid is completely normal this pregnancy. No trouble at all.

December 2012: At my regular endocrinologist appointment, she notices (via ultrasound) that one of my lymph nodes seems enlarged. This is the first time that she tells me that because of my age at diagnosis, she expects that my thyroid cancer will return at least once more in the span of my life. She also said the most likely way that will happen will be through it spreading to my lymph nodes. I do a bunch more tests (more ultrasounds and an MRI). She consults with Ear Nose and Throat doctor. It definitely is enlarged, but not alarmingly so. We are going to wait and watch. If it continues to grow, I will have a complicated surgery to remove the entire chain of lymph nodes. I REALLY do not want this.

Current: As of now, everything remains stable with my blood levels and lymph node size. I am very grateful for that. The best thing about thyroid cancer is how slow growing it is. So that is in my favor. I just hate how just when I forget that I ever had thyroid cancer, I get news that brings me back to reality. Will this kill me? Probably not. I see my friend who has a horrible cancer and what she has been through, and I consider myself so very lucky. But I, of course, wish that I didn’t have this either.

 

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My Thyroid Cancer Journey, part 1

Thyroid

Thyroid (Photo credit: Wikipedia)

I can’t believe it is almost 7 years since my diagnosis and surgery. Because of the relatively easy treatment for thyroid cancer it is sometimes easy to forget I had it at all. I’m still checked every 3-6 months. I don’t think about it much, until my doctor tells me I need to have additional tests…. that’s happened twice in 6.75 years. I’m currently in a holding pattern because I don’t want to do any additional testing and everything is staying stable.

 

Here is my Thyroid Cancer Journey:

 

April 2006: see first endocrinologist because I was recently diagnosed with Hashimoto’s thyroiditis and before that had been on thyroid medicine for low thyroid for years and my doctor friend suggested I svee a “Thyroid Doc” at least once. The doctor seems nice and competent. I get my first ever neck ultrasound. He says I have a few nodules on my thyroid, one is bigger than the rest, but nothing to be concerned about and sends me on my way. (In hind sight, I really wish he would have been more concerned about it.)
October 2006: we just moved to Colorado (which if I would have known it was a possibility that I had cancer, would have NEVER happened!). After moving into our new house I notice that I feel a weird pressure on my throat when I’m laying down. It feels just slightly heavy and makes me feel like I need to clear my throat. To this day I do not know why I took this so seriously,  but I just knew this was a different feeling for me. After 3 nights of feeling this, I pick a random primary care doctor out of my HMO booklet and hope I get a good one. The weirs pressure feeling either goes away or I got too used to it to notice after another week. I still decide I should see a doctor.
November 2006: I see my new doctor this one and only time. She was fantastic. She listened to me and said that my thyroid felt slightly enlarged,  but nothing she would have normally been concerned about. However,  since it felt different to me, she ordered an ultrasound. She told me how important it is for women to listen to their bodies and I am a prime example of that. (A couple months later I got a letter that she left the practice to start her own rural practice. I hope she did well.)
December 2006: have my second neck ultrasound.
January 2007: my doctor called to tell me the results came back abnormal and she referred me to an endocrinologist.
I pick an endocrinologist out of my HMO book and hope I get lucky again. There are none near me and it is a 45 minute drive to his office.
February 2007: I meet the endocrinologist and find him competent and trust worthy. He schedules a fine needle biopsy for the next week.
The fine needle biopsy hurt way more than he told me it would. It felt like the needle would go through my throat. He  also failed to tell me till he was doing it that he needed to jiggle the needle (while in my neck!) to ensure he got a good sample and that he needed to do it in multiple spots, multiple times.
Late February 2007: the results of the biopsy come back as positive for papillary thyroid cancer. I need to have my entire thyroid removed as soon as possible.  He refers me to his friend, a general surgeon. (The first doctor I don’t have to pick out of a book!)
March 7, 2007: surgery day. Everything went well. He took out my thyroid and about 20 surrounding lymph nodes. The surgery wasn’t too bad. The most unexpected problem I had was that the breathing tube triggered my latent asthma, so I had some trouble breathing in recovery.
Pathology came back later that month as papillary thyroid cancer tumors on both sides of the thyroid and in 7 of the 20 lymph nodes that were taken out. It was staged at Stage 2.

 

Up Next: my experience with radioactive iodine treatments!

 

Half-epiphany

I spent too much of my adult life under a giant cloud of depressed darkness wanting to die. I hated feeling like that, yet it became my norm and I subsisted along living my life as best as I could. Ignoring the dark thoughts about how much easier it would be if I was dead. Going to therapy to learn tricks to “reframe” my thoughts. Finally convincing myself that I didn’t REALLY want to die because I could never do anything to harm myself. One therapist called it something like passive suicide thoughts. Wanting to die was my brain’s way of letting me know that something(s) was not working in my life. She said it was not the same thing as wanting to kill myself. That it was a good thing I just wanted to die rather than wanting to actively kill myself. That the difference between those two things was me being bothered enough to seek help. At the time I understood what she meant, and yet at the same time felt marginalized. Like I couldn’t even be suicidal correctly.

But lately, I haven’t been under my cloud of depression. Actually, it has been over 2 years. My psychiatrist attributes this to the judicious increase of my thyroid meds (both T3 & T4). I don’t know if that is it, but it’s as good a reason as anything else since nothing else has really changed. After my first 3 babies I was always heavily depressed & required antidepressants each time, this last baby I did not. The difference being my thyroid meds.

Except… I’ve been feeling something new to me. And it is greatly troubling.  I am now scared I am going to die. Like seriously, bottom of my soul, scared I’m going to be dead soon. It is so odd to have gone from “passively” wanting to die to the extreme of being fearful of dying soon.

It is starting to effect my life. I stopped mid-shower one morning because I immediately had to teach my 4yo how to dial 911for when I slip in the shower. I won’t drive in the carpool lane bridge thing that is just too impossibly high to not fall off the edge. I won’t do too strenuous exercise because I know for sure it will cause me to have a heart attack because of my weight.

As I write those out, I know they are most likely NOT going to happen. But when I experience these thoughts, I am 100% sure they are going to happen. And these thoughts make me feel bad, very, very bad.

I’ve just been dealing with these thoughts by either doing something actively against them (not driving on the overpass) or trying to resign myself to accepting that everyone dies at sometime (at least Easton will be able to call 911).  But both of those things still make me feel icky.

My epiphany was that maybe I’m experiencing anxiety (duh!). But this is where it gets murky for me. I don’t feel how I think other people feel when they say they have anxiety.  My heart doesn’t race & I don’t have a panic attack. Instead, I just worry and fret and can’t stop thinking about it. Sometimes my sleep is affected,  sometimes  it’s not. I think about getting “help” but don’t have a lot of confidence that my psychological team will be able to help me. After all,  I was depressed for probably 15 years with only moderate relief. Then there’s the small part of me that’s worried I’ll be told I’m not really anxious and that it could be worse… in other words, I’m doing anxiety wrong like I did suicidal thoughts wrong. And that’s why I feel like this was only a half-epiphany. Because I’m probably doing it wrong.

My Health Issues

I often ask myself how I got to this point. How did I let myself get this big? How did I let myself stay this big? Why am I OK with being so miserable? How did I let this go on this long?

The only answer I can come up with is that I have made a lot of excuses for myself. Many of them are related to my health. I don’t think of myself as an unhealthy person, but I have my share of health issues, many of them related to being obese. Many of these issues get in the way of my weight loss.

Physical health issues:

  1. Plantar fasciitis flares up when I exercise, especially walk. This is problematic when I am trying to lose weight.
  2. Pre-diabetes, insulin resistant, PCOS, formerly had Gestational Diabetes… all of these are essentially the same. After this last pregnancy and being on insulin, I really don’t want diabetes to be in my future. I had the not-so-fun experience in the hospital, after Gemma’s birth dealing with “Dueling Doctors.” Each new OB would come in (none of whom I saw for prenatal care) had differing opinions on a diabetic diagnosis. Some thought I was already a diabetic, and not just gestational, and tried to keep me on insulin. Luckily, I see an Endocrinologist (diabetes specialist) for my thyroid issues, and she very clearly believed that I was NOT type 2. So I had to assert myself many times and say, “But my Endocrinologist feels that I am Prediabetic/gestational!” And almost all the OBs were happy to defer to the “Diabetes Doctor’s” opinion.
  3. Previous Thyroid Cancer. In 2007 I had a total thyroidectomy due to thyroid cancer. I had a radioactive iodine treatment in 2007 (I also had a recurrence and had another treatment in 2010). My doctor in 2007 me that I essentially don’t have a metabolism any more and that losing weight would be essentially difficult to impossible. In the 6 years since, I have found that to be true. I have to work extremely hard to lose just 10 pounds, which is then just frustrating, so I quit.
  4. Shoulder/knee/wrist pain. These different pains act up sporadically. The knee is definitely from my weight. The shoulder pain has been a lot better lately. And my wrist pain is from a ganglion cyst, but it only bothers me doing push up, weight-bearing type activities.

Mental health issues:

  1. Depression: This is a big one for me. I have struggled with this since my early 20s. I think depression is partly what caused me to gain weight, and then being bigger caused me to be depressed and then vicious cycle.

Perceived health issues:

  1. Stupidly, being obese makes it really hard to do anything physical. I mean, obviously it makes sense why, but sometimes it is just another obstacle to getting healthy.
  2. Exhaustion. When I say I am tired all the time, I literally mean ALL THE TIME. I could nap at any given time. Sometimes I worry that something else is wrong because of how exhausted I am, but I am 99% sure it is because of my obesity. Duh, I know.

Mortality:

I turned 38 in April. This number has had a profound impact on my thinking. I suddenly realized that I may have already lived half of my life!! Talk about a depressing realization! But what made me even more depressed was realizing that almost half of my 38 years have been with me being unhealthy and overweight. It is hard to know exactly how long I have been this unhealthy. I know I gained almost 50 pounds my freshman year of college. That sucked. Then I gained another 25-35 over the next 10 years. And then another 10-15 in the last 5 years. I’ve felt like utter, complete crap for so much of that time. It is a crappy way to live, but I did it day in and day out. But something about turning 38, and being 2 years away from 40 that has made my mortality hit me. I am suddenly motivated to not only improve my daily life and enjoy my health, but to be around to enjoy my grandchildren.

I hope that I have AT LEAST another 38 years of living, but I don’t want them to be like these past 18 years! I am ready to make a change, despite all my health issues.

Thyroid Cancer Summer

Ugg. I had to have another radioactive iodine treatment for Thyroid Cancer this past end of July. A couple of things really SUCKED about it.

1. My Thyroid Cancer was back. Cancer SUCKS. Supposedly, Thyroid Cancer is the “good” cancer to get. Sure you don’t have to have Chemo or Radiation, but it is still Cancer. And having Cancer is SCAREY.

2. To do the RAI, I had to go on a low-iodine diet. That’s the crappiest diet ever!!!! Obviously no iodized salt, but you don’t know if restaurant or prepackaged food uses iodized or non-iodized, so you have to assume it is iodized. Also, no Soy products, no fish products, and NO DAIRY. Ugh. I wasn’t very compliant because I didn’t have to do this diet the last time I did RAI with a different doctor, so I felt like it would still be fine. So I just avoided Dairy, soy and fish, but still had some packaged foods and ate out, minus those items. I ate a lot of homemade bread and avocados and fruit.

3. RAI isolation. Being that I have young children and a 17 month-old, this was important that I didn’t expose them to any radiation from my dose. The problem is that you don’t know if you are still radioactive or how much you are emanating. So I was in the hospital for 2 nights in isolation-boredom: the nurses wouldn’t even come in! All food was left at the door and I was called on the phone. Ugh. After I was discharged, I went to my parents and stayed in their extra bedroom. I had to have my own bathroom since most of the radiation would be eliminated through my waste. But the worst thing of all at my parents? NO INTERNET!!! I know, the horror!!

4. Thyroid hell afterwards. The last thing that has been difficult has been the way I felt. I had to go off my thyroid meds for 4 days and get injections of Thyrogen, to make my TSH go up as if I had been without Thyroid meds for 3 weeks. The idea of Thyrogen shots is to avoid the horrible feels of hypothyroidism (low thyroid hormone levels). But 5 days after my treatment I was feeling BAAAAAD. Exhausted, in a special, no thyroid kind of way, cold, and achey. My doctor didn’t think I should be feeling that way since we did the Thyrogen, but at least she believed me and treated me with T3. It has been 3 weeks and I’m still feeling tired, but she’s still letting me be on the T3, for which I am grateful.