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Triple Whammy or How to Cope with Multiple Cancers Part VIII – Glowing in the Dark – by HD

Post Published: 19 September 2010
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Category: Guest Bloggers, Managing Multiple Cancers
This post currently has 5 responses. Leave a comment

So far, I took you on a tour through my chemo and radiation treatments, but there is more, – that rather aggressive skin cancer and the pesky thyroid cancer still haven’t been dealt with. So let’s push on, and slay some more cancer monsters.

For the skin cancer I had to have yet another operation. Firstly, it was important, because merkel cell carcinoma is so very aggressive, that the surgeon get an extra good margin around the tumor (to possibly catch any malignant cells on the move, so to speak).  Secondly, it was important to find the sentinal lymph node. Well, – what is that now?  It is the first lymph node (or group of nodes) that a cancer might have spread to (metastasized) from its origin. They find the lymph node by injecting a radioactive die near the cancer and then scan you to find the exact lymph node locations.

This scan had to be done at the hospital in the nuclear medicine department; – and I should have been suspicious when the note from the hospital read to please “wear a comfortable bra”.  They ordered the wrong radioactive die solution, what they ordered was for a breast cancer patient, but my dose had to be a little stronger. So, I had to wait an extra day for my scan and subsequent operation. By the way, frivolous as I am, I did not wear a bra at all that particular day.

I have been a lucky man in my fight with multiple cancers, because once again it turned out that this very nasty Merkel cell skin cancer had not yet reached my lymph nodes; and my survival rate therefore had greatly improved. Yippee, I’d say!

So, now I have this sizable hole, which I call my “Crater Lake”, like the one and only national park here in Oregon, on my lower left arm.  The hole was so deep that the skin could not be sown together over my wound, I had a skin graft from my thigh put over it instead. Because of that, a plastic surgeon did this particular cancer operation on me. I asked him whether he could throw in a nose-job for free, but no such luck.

You may ask, what about that thyroid cancer of yours? – Well, it had to be postpone once again.  The die used to find the sentinel lymph node interfered with the planned thyroid cancer treatment.  And, as I already mentioned, I needed yet  another round of radiation of my arm and lymph node first.

Finally, fully 10 months after the initial diagnosis and thyroid (and throat) surgery, could the thyroid cancer be properly addressed and treated.  – Papillary thyroid cancer is very slow growing, and of course my thyroid gland was removed entirely, so my doctors agreed that there was only a very small chance that any remnant thyroid cancer cells could have spread. No cancer is ever easy or good, and thyroid cancer is no exception (see here for my write-up on the so-called “Good Cancer Myth” – Part 1 and Part 2).   But in my case it was indeed very fortunate that it was papillary carcinoma, and that the treatment could be delayed for so long.

Surgery followed by RAI ablation is the usual treatment for this type of thyroid cancer. Ablation is a medical term meaning removal, and RAI stands for radioactive iodine (I-131) treatment. Thyroid cells in general have an insatiable appetite for iodine, they gobble it up like crazy; so – if you make that iodine strongly radioactive (something all cells hate intensely) these cells will die. That was exactly the method used on me to kill any stray (possibly cancerous) thyroid cells still floating about in my body.

In order to make the cells really starved and crave for that iodine, the doctors even put me on to a low iodine diet (LID) and they took me off my thyroid medication. – Great, you may say! – Well, not really. – I hated that horrid diet so much, I wrote about it here. And being off your beloved medication is no fun either, because you will become very hypothyroid (hypo = not enough, deficient), and you have all the wonderful symptoms of it, – like being a sleepy zombie and a cranky curmudgeon that gains weight by just looking at food. – A full list of the symptoms of hypothyroidism can be found here.

Since the dose of radioactive iodine given for ablation (to kill all thyroid cells) is rather large, they either lock you into a lead-lined isolation ward at the hospital, or – if you don’t have small kids at home and can supply a separate bed and bathroom, like I did, – they let you go home to be sequestered (isolated) for about 5 days.  You have to flush the toilet several times after each use, and even your underwear becomes hazardous waste to be disposed off in a plastic sack marked with a big bold radioactive sign.

Food during that time is pan cakes only, because only those can be pushed under the door into your prison room. – Just joking!  – But you are indeed not to approach anyone to nearer than 10 feet (3 m) during that time.

One good thing about the RAI treatment is that the radioactive iodine really only is absorbed by thyroid cells and not other healthy cells.  The glowing in the dark RAI stuff is usually quickly discharged, mostly through your urine, but also via your sweat, and through your bowel movements. But if you plan to travel by air shortly after your treatment, make sure to get a Dr’s. note; airport equipment may scan positive for up to 90 days past your ablation.

Enough about the treatments of multiple cancers.  As I said, one is the star in ones very own horror show.  You’ll be cut open, beamed at, they’ll pour witches brew into you, and they make you glow. Real scary stuff, for sure, – but all these spooky procedures are just fine with me, as long as they get rid of any malignant growths in me. Amen!

————–

Multiple cancers also means multiple doctors and medical facilities; and sometimes it is really hard to keep all your medical balls in the air at the same time. For me they were: the surgical oncologist (oncologist = cancer specialist), the radiology oncologist, the “regular” or medical oncologist (that is the one dispensing the chemotherapy), the endocrinologist (thyroid and endocrine specialist), the surgeon, the anesthesiologist during surgery, the plastic surgeon, the dermatologist, even the dentist, and of course a primary physician.

Keeping them all informed can be tricky and sharing medical records between them doesn’t always work.  For example when I had my thyroid whole body scan I was put on thyrogen, well one of the side effects of this drug is to produce  rather elevated cholesterol levels, and promptly my alarmed primary physician gave me a call when he saw my blood values. Should he have known that I was undergoing WBS with thyrogen, surely – my records were sent to his office, but he didn’t make the connection. Episodes like this happened not infrequently.  Keeping all these doctors in sync is a little like choreographing a complicated medical ballet, except no-one is wearing tutus.

As I said before, while going through cancer treatments for many months, it was very important to occasionally be distracted and to have some fun, because one just cannot help it, there will be times when dark, dark thoughts will creep into your brain, and you will be thinking about “what if” these cancers are not getting any better, but worse?

The next installment will be hard to write (and probably also hard to read), because I will be talking about preparing for the worst.  I will tell you what I did, and why I did it.  Come back and read it next week.

Here is to your health!

HD in Oregon

To read previous installations of this series, check out: Coping with Multiple Cancers, Learning to Ride the Dragon, Dearly Beloved, I Think I Can, Smell the Roses, Beam Me up, Scotty (Radiation), Witches Brew (Chemotherapy),

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5 Responses to “Triple Whammy or How to Cope with Multiple Cancers Part VIII – Glowing in the Dark – by HD”

  1. Amanda says:

    HD,

    This all has been such a good, interesting read. I never “wanted” to read about it, but I know it is good to know. As I have touted before, my first biopsy on my thyroid showed no signs of cancer. But that fear is in me, as my endo said it will have to be watched. I can’t imagine reading an more thorough coverage of cancer treatments. Thank you for writing it all out. I know you have helped me, if only in understanding what it is all about.

    I love your humor and attitude. I agree with you about choosing a positive attitude, it is essential.

    Be well,
    Amanda

  2. HDinOregon says:

    Thank you so very much for your kind comments, Amanda.

    HD

  3. Michelle says:

    Once again HD a great article. My thyroglobulin has not leveled out yet so looks like I’m marching toward RAI at 10 months post surgery too! I am clicking on your LID link as soon as I finish typing this 🙂

  4. Melissa D says:

    Thanks for sharing HD. Informative, relatable and witty. I had RAI, but didn’t really educate myself on it, I asked the doc if I had to be isolated from other ppl and the head administrating doctor reassured me that I didn’t because it was a “small” dose. I was so concerned about affecting others. I hope he was right. It is tough to juggle all of the necessary treatment balls, especially while feeling sick. I personally am sick of being inside a dr.’s office so much that watching (especially trendy) Dr. shows and medical shows repulse me. many people feel they are informative, but I feel like when I put the “tube” on, ideally I want to not think about Dr. stuff, lol. But that’s just me. Keep up the great attitude and perseverence, and I hope that you get past this and feel better soon 🙂
    Mel

  5. Justi says:

    To many of us you are our hero! Thank you for sharing, and writing so well HD!~

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