Mike Salsbury’s Blog

One of the readers noted that I haven’t posted an update in a while, so I thought it might be a good time to do just that.

I saw my endocrinologist earlier in the year.  They took blood samples to identify the level of thyroglobulin protein in my blood.  This test, as I understand it, is an indication of how well the surgery and radiation therapy did its job in eliminating thyroid tissue and thyroid cancer cells.  The test results indicated that my level was “undetectable” which indicates that they probably got all the cancer.  There will be annual tests from now on to monitor that protein level, the increase of which would be a likely indicator of the return of the cancer.

At one of my last visits, my thyroid hormone level was checked and was found to be a bit low.  I’m now taking the same dose I was before, but I take an extra half pill on Sundays.  They will check my level again in a few weeks to see if it’s good as it is, or if I need to take more of the Synthroid.

For the moment, the worst of the cancer and treatment are behind me.

I was asked how I’ve been feeling of late, now that we’re into a more “maintenance mode” for the cancer and thyroid hormone.  Before I answer that, it’s important to note that I suffer from some other medical issues that may or may not be impacting things.  For example, I have been diagnosed with fibromyalgia, which is an illness that occurs for as-yet-unknown reasons and causes a person to feel pain in otherwise-healthy areas (usually muscles and joints).  I’ve also got high blood pressure and take medication for that.

Given the above context, I can tell you that before the thyroid cancer diagnosis, I would occasionally get muscle cramps.  This would happen maybe every other month, varying in severity from uncomfortable to “painful as all-get-out”.   Usually if I took an over-the-counter potassium supplement or ate a couple of bananas it would go away for a long time.

Since my thyroid was removed, the frequency and severity of these muscle cramps (commonly referred to as “Charlie Horses”) has increased.  It’s now almost a daily occurrence that I have a moderate-to-severe muscle cramp somewhere.  This past week, I’ve had several, some occurring during my sleep and causing enough pain to wake me out of a deep sleep.  At about 4:30am last night, I had a severe pain in my left calf and thigh, and a less-severe one in the right calf that woke me up and forced me to stand at the edge of the bed.  I was in so much pain that I couldn’t keep as quiet as I wanted to, and ended up waking my wife.  I’m still carrying that pain with me.

A low thyroid hormone level is one possible cause of muscle cramps according to what I’ve read online.  Certain blood pressure medications (specifically hydrochlorothiazide) can also cause this.  So can low potassium levels.  So can a long laundry list of other things.  I mention this because it it COULD be related to the thyroid treatments, but I have not had a chance to consult with my doctors to get their opinion.  What I can tell you is that whatever is causing these pains, they’re beginning to disrupt my life quite a bit.  It doesn’t seem to take a great strain to trigger one of these.  A gentle stretch, a bend of the arms or legs, etc., can set one off.

Apart from the muscle cramps, which are hard for me to ignore, I’m otherwise doing fine.  Once a month I refill my synthroid prescription.  If I run out, I notice that I’m more easily tired and what I assume is the fibromyalgia acts up.  I tend to stay on top of this prescription far better than I do some of my others as a result.

admin Life papillary carcinoma, thyroid cancer

The results of the scans done on December 26, 2008, showed that the radiation from the therapy went where it was expected to go and nowhere else. That means it’s unlikely that the cancer spread beyond my thyroid.

I’ve been on synthroid (replacement thyroid hormone) since December 22 and most of the symptoms I experienced are now gone. I still get an occasional muscle cramp or ache, but nothing like I had been seeing.

My doctor noticed that I was taking a diuretic and said that this could be the cause for the muscle cramps I had been experiencing. I’ve been off the drug for several days and the cramps have almost vanished, which is a good thing as far as I’m concerned.

My next scheduled doctor visit is at the end of February, when I presume we’ll look at thyroid hormone levels and thyroglobulin levels to establish a baseline for the next treatment steps.

admin Life hctz, papillary carcinoma, thyroglobulin, thyroid cancer

On Tuesday, I took a “tracer” dose of radioactive iodine.  On Wednesday, I took another.  Thursday I underwent two scans to see where the tracer doses went.  As expected and hoped, the scans showed that the radiation was pretty much confined to my remaining thyroid tissue.

Based on the result of those scans, the doctor set my “big” dose of radioactive iodine to 75 millicuries.  In terms of the range of potential doses used to treat thyroid cancer, it’s in the lowest range of doses.

On Friday morning, I took a 76 millicurie dose of radioactive iodine.  Apparently, I also contracted a cold and cough.  Since the radiation, lack of thyroid hormone (part of the treatment), and restrictive diet most likely reduced the overall effectiveness of my immune system, I now have a sinus and chest cold on top of the symptoms of hypothyroidism and radiation treatment.  I’m sneezing and coughing on a pretty regular basis, and feeling exhausted and tired much of the rest of the time.

I know this is nothing compared to what other cancer patients like my mother (who died earlier this year from melanoma) have gone through, and I am both respectful of that and grateful that my situation isn’t worse than it is.  Still, it’s not an exaggeration to say that I feel worse than I can remember feeling in a long, long time… if not the worst ever.  While I will probably never understand what my mother went through in her final days, I think I have a greater appreciation of it than I ever did before.

Tomorrow morning, I look forward to being off the low-iodine diet.  That means I can have things with dairy (like my morning coffee with milk), sandwiches with cheese, and pizza again.  I can have sushi, Chinese food, Indian food, and more.  Perhaps even better than that, I’ll once again be back on the synthetic thyroid hormone. That should be the end of the severely dry skin, muscle weakness, unexplained muscle cramps, shortness of breath, and other symptoms I’ve had to endure since before Thanksgiving.

This coming Friday (12/26) is another set of scans for radiation, to determine where the last “big” dose went. Friday’s scan is supposed to be “more revealing” in some way than the one I had last Thursday.

After that, I’ll be working with the endocrinologist to regulate the dose of synthroid I’ll be taking from now on to give me a “normal” level of thyroid hormone in my blood.  I guess you could say that the end is in sight, at least as much as there is an end to this.  I’ll be having tests each year from now to confirm that the cancer hasn’t returned, so in a sense it will never be truly “behind me” and will always be somewhere out there in the distance.

admin Life hypothyroidism, low iodine diet, papillary carcinoma, radioactive iodine, radioiodine, thyroid cancer

I’m almost through my first full week of the low-iodine diet.  All things considered, it’s not that bad, but it’s certainly not fun.  I pretty much can’t eat in restaurants.  I can’t have anything with salt, because it might be iodized salt.  I can’t have anything with seafood or sea-based products (such as sea salt, seaweed, or seaweed extracts).  I can’t have dairy products. I can’t have soy products, such as soy sauce.  No egg yolks or anything containing them.  No bread products that contain iodized salt or iodine based dough conditioners (whatever those are).  There are lots more restrictions. 

Pretty much, my diet this week has consisted of: unsalted walnuts, unsalted sunflower seeds, oranges, apples, bananas, celery, home-cooked chicken, home-cooked pot roast, veggies, a special bread from a bakery that doesn’t use iodized salt, homemade popcorn with unsalted margarine and non-iodized salt, rice, and pasta.

Unfortunately, since I’m off the thyroid medication, too, I don’t think I’ve actually lost any weight on this diet.  Being off the thyroid medication is the worst part of this by far.  I get horrendous muscle cramps for virtually no reason. For example, one day this week at work I moved my arm slightly (not rapidly, not holding anything, etc.) and suddenly the muscles under my arm and on my rib cage under my armpit absolutely throbbed in pain.  I don’t think I’ve had that much pain in years, and it took the better part of an hour to go away.

Another added “benefit” to being off the synthetic hormone is that I’m really sensitive to cold temperatures, which is just great in December in Ohio.  What makes it more fun is that I’m in a recently-renovated area of our office complex at work.  This new area has a heating system that the engineers are still working the bugs out of.  This afternoon, a co-worker measured the temperature and humidity in our area, which was 70 degrees with 24% humidity.  He said the calculations say that feels like 64-65 degrees.  Everyone in the area, none of whom are hypothyroid, is complaining about the cold.  My hands and toes have been so cold the last couple of weeks that at times I can’t even feel them.

When I got in the car, I was so cold I started shivering.  That shivering activity set the muscles in my chest off with yet-another cramping spasm.  The pain continued at a decreasing level until we got home.

While making dinner, one of our cats was lying on the floor nearby, hoping for a handout. I stepped on his tail and he let out a screech. I reacted instantly to lift my foot and get off him.  That caused my leg muscles to spasm, which made me double over in pain.  Doubling over caused my shoulder, the muscles under my arm, and muscles under my armpit to all cramp in extreme pain.  By the time the pain subsided, my dinner had pretty much gone cold.

As if the muscle cramps weren’t enough, I get short of breath often, my leg muscles feel really weak, I’ve had memory lapses, headaches, dry skin, and have to be careful not to be “short” (mean/rude/impolite) to others.

The diet will continue until 12/22, when I’ll revert to a normal diet again and start taking the replacement thyroid hormone again.  I’m looking forward to that.

On Tuesday and Wednesday next week, I’ll be taking small doses of radioactive iodine.  Thursday I’ll undergo a radiation scan to see where the iodine went.  Friday (12/19), I’ll take the “full-size” dose of radioactive iodine.  That will begin a six-day period of keeping at least 6 feet from other people and pets.  Fortunately, that period will end on 12/25, so I’ll be able to spend time with the family then, be back to a normal diet, and taking replacement thyroid hormone once again. I ought to feel a lot better then than I do right now.

admin Life low iodine diet, radioactive iodine, thyroid cancer, thyroidectomy

I was told to stop taking my thyroid hormone the day before Thanksgiving.  It began to take a toll on me pretty early on, and it’s only gotten worse.  According to endocrineweb.com, low thyroid hormone (also called hypothyroidism) carries with it a lovely list of symptoms:

• Fatigue
  Boy, have I noticed this one. Yesterday I walked a distance I used to walk every day without breathing hard, and wasn’t sure I would make it to the end between feeling worn out and in pain.
• Weakness
  I’ve experienced this one as well.  I don’t have the strength or endurance I had just a few weeks ago.
• Weight gain or increased difficulty losing weight
  This started even before the surgeon removed my thyroid, and I’ve been keeping a close eye on it. I don’t think I’ve gained anything in the last couple of weeks, and may have even lost a pound or two.
• Coarse, dry hair
  So far, I haven’t noticed this problem.
• Dry, rough pale skin
  The skin on my hands definitely mirrors this.  It’s much drier than it’s ever been, even to the point of almost cracking in places.
• Hair loss
  Fortunately, I haven’t see any of this yet.
• Cold intolerance (can’t tolerate the cold like those around you)
  Got this one in spades.  Doesn’t help that my office is in a renovated part of the building where the techs haven’t got the heating working just right yet, and that it’s now December. There was a long part of today where I couldn’t feel my feet and my hands were almost numb with the cold.  I’m the guy who could go outside in short sleeves for 10-15 minutes in the dead of winter, and now I can barely stand my indoor, heated office.
• Muscle cramps and frequent muscle aches
  This was the first thing I noticed, and it’s been getting worse.  Tuesday, I gently set my laptop bag on the floor in the den and really irritated the muscles and joint in my shoulder.  It caused intense pain for several minutes.  Other muscles and joints got in on the act later, to the point that I took two prescription pain killers and a muscle relaxer to try to counteract it.  It helped some.  Wednesday, my back decided to flare up and cause trouble.  Most every morning I’ve woken up with cramps in my hands that are so severe I can’t hold much of anything in them.  Even sitting here typing, my shoulders and arms are hurting.  I’m looking forward to the weekend when I can relax and move a minimal amount.  It’s not an exaggeration to say that stretching, twisting, or exerting any muscle scares me.  Most of the time, those actions cause pain comparable to a “charley horse” that lingers around for a while afterward.
• Constipation
  So far, so good on this one.
• Depression
  How anyone could have any of the above symptoms, combined with the knowledge that they have cancer, combined with the recent death of a parent, and not have some level of depression is beyond me.
• Irritability
  I hadn’t noticed, but apparently I do have this.  I said something I thought was slightly humorous but supportive, but dropped the jaws of everyone in the room because it was apparently “out of character” and mean.  I accidentally said something rude to a co-worker, too, in response to a comment she made… and I didn’t mean to be rude then, either. So while I may not be FEELING irritable, I must be based on the way others are reacting to me.
• Memory loss
  Yesterday, I would have said “no” to this one.  It started to be a problem today.  I’ve forgotten several things, sometimes very basic things like words I use often, and just couldn’t recall them.  I’m starting to understand what Denny Crane (William Shatner) on Boston Legal experiences with his Alzheimer’s.
• Abnormal menstrual cycles
  If this starts being a problem for me, it’ll be time to call the Guinness Book of World Records and maybe The National Enquirer…
  
  
• Decreased libido
  My wife probably wishes this was true.  I don’t think my libido has changed, but my desire to act on it has certainly diminished based on the cramps, aches, pains, and weakness I feel.

In addition to the above, I’ve noticed my voice having trouble today.  It sounds very weak and crackly to me. I can only imagine what it sounds like to others.  According to Wikipedia, that’s a symptom, too.  In fact, their list is a bit longer and indicates that I’m probably in the “late symptoms” category now. Oh, goody.

Monday I start the low-iodine diet.  This will probably take care of any potential weight gain because it eliminates nearly everything I can and do eat.  Fortunately, it does allow for an occasional beer and (homemade) popcorn.  On the serious side, it eliminates dairy products, seafood and sea-based foods, anything with iodized salt, anything with red dye #3, virtually all baked goods (due to iodine based dough conditioners in use), certain beans, more than 6 ounces of meat a day, and lots of other stuff.  What’s left is mostly raw fruits and vegetables, small amounts of home cooked meats without salt, popcorn, unsalted nuts, and homemade foods that you’re positive don’t include iodized salt or red dye #3.

Later in the week, I go in for blood work.

The week after that, I go in for a small dose of radioactive iodine. The next day, a scan. The next day, more tests (I think). That Friday, the “big dose” of radioactive iodine intended to kill any remaining thyroid cells or cancer cells.  For 6 days after that, I’m supposed to keep at least a 5-6 foot distance from others to avoid exposing them to radiation.  Thanks to the two surgeries and my mother’s illness earlier this year, I have no sick time left and barely any vacation days, so I’ll have to work at least one day while I’m in this “radioactive” state.  I’ll try to find a place away from my colleagues and as far as possible from others.  In a company of 1200 people that may not be easy.

On the 22nd, the worst of it should be over, as I’ll start taking the permanent thyroid hormone replacement and eating my normal diet again.  By Christmas, I’ll no longer be (dangerously) radioactive so I won’t be excluded from the festivities.

That’s all for this round. I’ll share more once the diet starts.

admin Life low iodine diet, radioactive iodine, radioiodine, thyroid cancer

The surgery is only a memory now, and will be a week ago tomorrow.  I just spent my first full day back at the office, and it was a fairly busy one.

The steri-strips over my incision are starting to come loose and are expected to fall off of their own accord in the next day or two.  The little bit of the incision that’s already visible doesn’t look too bad.

I’m not feeling too bad. I got a little tired late in the day at work, but walk and some decaf coffee perked me up enough to get through the rest of it.  There is a small amount of pain left in my throat, and the incision area itself occasionally burns a little, but I haven’t had to touch the prescription painkillers for days.

There are lots of doctor visits in my immediate future… follow-up about the surgery, planning for the radioactive iodine treatment, working out a dose of synthetic thyroid hormone, and whatever else might arise in the meantime.  Still, I’m happy to have the cancer out of my system and to continue on.

admin Life recovery, thyroid cancer, thyroidectomy

A few months back, I noticed that it seemed like the medications I took in the morning were getting stuck in my throat.  I’d go most of the morning feeling like I had a capsule in there that just wouldn’t go down.  Then I noticed on mornings I forgot to take my medications that it still felt that way.  I thought I’d massage my throat and see if it helped with the sensation any.  In doing so, I found a rather large lump. It felt like about half the size of a golf ball.

admin Life papillary carcinoma, thyroid cancer