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Triple Whammy or How to Cope with Multiple Cancers: Part VI – Beam me up Scotty – by HD

Post Published: 05 September 2010
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Category: Guest Bloggers, Managing Multiple Cancers
This post currently has 8 responses. Leave a comment

In last weeks segment I wrote about the need to “smell the roses” and to have some distractions and fun before and while you are undergoing cancer treatments.  Today lets get into some of the nitty-gritty of the various procedures, especially radiation treatment.  Treating cancers is much like a horror show, so be prepared, it could get a bit rough and spooky here.

Just a few days ago I learned that the actor Michael Douglas was diagnosed with throat cancer and has just started his radiation and chemotherapy.  His cancer is stage 4, which means his has spread somewhat from its origin; mine was stage 2 and did not spread. – One always feels a kind of kinship when another person is suffering from a cancer so similar to ones own. – Michael will go through the same procedures as I did in 2007.  It will be very rough and bumpy for him. My heart really goes out to him and his family.

After my initial throat (and thyroid) surgery everything needed to have healed up nicely before my radiation therapy could begin. But there was one item that, though another patient pointed it out to me, the radiology doctors neglected to mention entirely; – it was the need to have ones teeth and gums thoroughly examined before you start neck treatment. So off I went to see my dentist, and since I knew that I had one tooth that was on the “iffy” list, we decided to have it extracted rather than to invite trouble.  Other patients I talked to had a number of their teeth pulled before undergoing this treatment. I lucked out again with only a single loss.  You see, radiation makes a real mess of bad or inflamed tooth or gum tissue.

I already mentioned that receiving radiation treatment means you are town-bound for a good lengthy time.  For my neck treatment I showed up every single work day for seven weeks straight. Naturally after a while I got to know my radiation technicians and the other staff at the cancer center pretty well.  I talked to them, I joked with them, and almost became buddies with them.

Scott was one of the wonderful radiology techs.  Like the engineer in the Star-Trek series, Scotty had to sometime nudge and coerce the big radiation machinery back into life and working order.  Personally I found all this technical medical stuff very fascinating, and he willingly explained to me how it all worked.

Just to reiterate (but, of course, you knew all this already), radiation treatment works by bombarding the areas of your tumor (plus surrounding areas where the cancers may have spread to, plus possible lymph node areas that might be cancerous) with a strong powerful x-ray type beam (in my case it was ionized photons). Cells really don’t like that at all.  All cell structures get damaged by the effects of the radiation. Now the trick is, that healthy cells can recover much faster from the beam’s damage than cancer cells. You see, – them cancer things, they’re a bit dim and slow, and by the time the healthy cells have repaired their DNA and are more or less OK again, the sluggish cancer cells are blasted again with the next dose; and eventually they cannot keep up anymore, throw up their arms in disgust, and then they shrivel and die. This is, of course, exactly what is intended here. Hurray, let’s beam ’em away, Scotty! – That is also the reason radiation session are scheduled so close to each other and over a lengthy period of time.  (Well, to be honest, I actually did not fully understand that this was the way it all worked.  See, one never stops learning.)

At the very first visit to the radiation therapy center, the doctors usual do a comprehensive survey on you. That means they determine (by using a scanner) where exactly your cancer is located (to minimize, as much as possible, radiating any healthy tissue). – And I already mentioned the little tattoos they put onto your body in order to aim the equipment (and its guide laser beams) precisely at your tumor and treatment areas.

With my neck cancer I had to have my head immobilized, so I received a custom made mask which was then bolted to the treatment table. No way could I move my head at all. Yes, it was a little claustrophobic, I must admit. – Here is a picture of me on the table wearing this face mask. I heard of people that could not stand this procedure at all, and had to be heavily sedated in order to make it through their radiation sessions.

There was music offered during the treatment sessions, but it was not to my taste, so I brought my own CDs from home to be played while I was screwed.  Screwed, via the face mask, to the treatment table that is.  Of course you are all alone in the radiation chamber and the massive lead-lined doors are closed while you receive your dose. The staff is monitoring you from the outside through a video link.

The treatment table was elevated to the exact position for the machine to start giving me the beam bursts. The entire head (the business end where the beam comes out), was movable and could circle all around me. It looked very surreal and scientific.  Here is another picture of me on the table. – Some times the table was cranked up way high so that I was more than five feet above the floor (high enough to requested an oxygen mask and a parachute for safety’s sake).

The actual radiation does not take very long at all. From a few seconds  to up to a minute or so per target area, but I had nearly a dozen different areas that needed to be treated, so the entire process (most of it involving the positioning of me in the precise spot) lasted about 40 minutes. – You hear a curious buzzing and clicking sound when the radiation is actually being applied.

First I didn’t notice much change to my skin, neither to the outside of my neck, nor inside to my throat.  I was told not to wear deodorant to the radiation sessions (they often have metals [mostly aluminum] in them which would interfere with the radiation), and I was told to apply a special radiation ointment (to minimize the skin burning damage) to the affected areas after each session. Also the liberal use of aloe-vera gel was recommended. – So it took quite some time until I became aware of any reddening and tanning of my skin.

But about 4 weeks into the 7 week process, I began to really feel the effects. My throat started to ached mildly at first, and as the treatments went on further, the hurting became more severe and pain medication became a must. (I hate it when doctors talk about “discomfort” when it hurts like hell).

At about that time my normal (oral) meals started to become really difficult. Solid food was minimized, then stopped, and soup time arrived. Luckily my dear wife is an excellent cook, and we had some rather memorable soupy culinary delights. – And a little further into the treatment it was time to switch to the feeding tube. That on the other hand was no delight what-so-ever.  Most disagreeable and horrid !  Cans of fortified nutritional stuff being pushed by a giant syringe through a tube directly into your stomach.  It was mostly vanilla or choco flavors, and I soon hated them intensely.  The mere odor of it made me run for cover (remember my ability to smell remained operational throughout this ordeal). – Luckily the feeding tube time lasted for only a little over 3 weeks and slowly I was able to have some real food down my throat again. What a relief!!  – Believe me, that period on the PEG-tube was not at all to my liking.

And, as predicted, during that period, my taste buds went bye-bye.  Not all at once, but gradually.  I noticed that more and more things started to taste like really bland card board. Yuck! – And towards the end of my radiation treatments it was impossible for me to taste anything at all.

It took a good year until all my taste buds came back home.  They came back as gradually as they left me.  For instance, suddenly I noticed I could taste coffee again (but not yet tea).  It was a little like the TV commercials with “Mikey likes it” – I had to use the trial and error method to see what “my personal” new flavor of the day was.

On a more somber note, a former neighbor of mine had a similar throat cancer, but not all of his taste buds regenerated successfully. To this day (eight years since treatment) he still cannot taste anything sweet.  – Again, I found myself really lucky – and I am extremely grateful for that.

I was warned that after the radiation treatments were over, I would by no means feel better right away, on the contrary, the deterioration of the insides of my throat would continue for a few additional weeks before healing and improvements would start. And sure enough, I felt really dreadful for another two weeks. Slept or “zombied” through life for most of that time (well, the pain medication amplified this in that they made me very drowsy too). – So, please don’t schedule any trips or important things right after the end of your radiation treatment for throat cancer.

At one point I asked one of the radiation technicians which cancer they thought was the most difficult to treat, and the answer was (interestingly) anal cancer, but closely followed by throat cancer.  Throat cancer because of all the possible side effects to various important areas in the neck, like teeth and gums, thyroid gland, vocal chords, tongue, taste buds, etc. – But I never found out why anal cancers are so difficult to treat with radiation.

At the end of my first 7 week treatment I was leaving good friends behind at the cancer center (I didn’t know then that I’d be back for an encore performance). – So, what do you say to a radiology technician at the end of your treatment? – I hope I never see you again?  Good riddance? –  I settled for the following: thank you so very much for all you did for me, and I hope we’ll meet again at the movies or at the supermarket in town, but please – not here again!  (I also purchased two large boxes of chocolates which I left at the treatment center. One for the front office staff, one for the technicians and nurses).

Well, I did get another 5 weeks of radiation onto my arm and lymph nodes a few months later. And yes, I purchased more chocolate boxes!

—————

My chemo for the throat cancer happened concurrently with my radiation treatments, which meant that on Mondays I had them both.  Radiation in the morning and chemo in the afternoon. More about the chemotherapy part of my treatment in next week’s installment which I entitled “Witches Brew”. Stay tuned for that potent concoction.

Here is to your health!

HD in Oregon

To read HD’s other installations: Multiple Cancers Part I (an intro) – Learn to Ride the Dragon Part II – Dearly Beloved Part III – I Think I Can Part IV

If you didn’t participate in yesterday’s “Thyrants, Thyraves and other Thylicious things, please do. Belt it out. Shout it out. Squeak it out. Just get IT OUT. If you missed info about ThyCa’s 13th Annual Upcoming Conference, check out Chris Prestano’s post about it.

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8 Responses to “Triple Whammy or How to Cope with Multiple Cancers: Part VI – Beam me up Scotty – by HD”

  1. Lolly says:

    HD,

    Thank you for your article how much you have been through. I hope that cancer never comes knocking at your door again and that also Michael Douglas will be successful with his treatment.

    Good health to you too.

    Lolly

  2. HD, thanks for sharing this. Learning about other types of treatment is SO important–THANK YOU!

  3. HDinOregon says:

    Lolly & Joanna,

    Thanks for the kind thoughts.

    I hope that those who are fighting multiple cancers will get a little help and encouragement out of my articles.

    Take care,
    HD

  4. Lolly says:

    HD I am sure they will gain lots fom this I know I did and I donlt have cancer but If I did or If ever I know where I would be looking I think you gave a gre\t account of what happens what to do before and after.

    May your cancer be a thing of the past and may only good health follow from now on.

    Keep up the good wok I am sure I have missed some episodes but just couldn’t find 2 and 3.

    Lolly

  5. Linny says:

    Thank you for sharing your personal experience. I haven’t been thru this use of raditation and I hope I never will. But if I was looking at this ahead it is always helpful to know what a patient feels instead of what the Dr.s say will be the effects.
    No matter what I have experienced in my life, I always turn to reading and studing and I feel so much better. It is always the unknown that frightens me. When some leave out the “worst” for the surprise effect I believe it’s TWICE the trouble because nobody told you the truth. Like walking thru a dark tunnel without knowing whats inside….a spider or even a “boo” will shake you up. Knowledge is Power. Thank you for sharing, I am sorry you have been thru so much. My best to you and your wife, Linny

  6. Marie F says:

    I am re-sending this because I clicked the box asking you to “Notify me of any follow-up comments.”
    Thank you for sharing your experiences with us. You will definitely be added in my thoughts, as will Michael Douglas &; his family-as this will be very hard on them.
    I am leading up to an important question, so please bear with me…
    I had adenoid cystic carcinoma and had half of my soft and hard palate removed. Such a small percentage of one’s body, but which feels like a crater in the
    Grand Canyon to me.
    Having a “half-full cup” personality, I am grateful for the radiation even though it—
    -destroyed all of my saliva glands, which
    -destroyed all my teeth, which then
    -destroyed & receded the surrounding bones,
    -causing so much trismus (scar tissue) that some days I cannot open my mouth to sip water…
    Even so, I am grateful, radiation and wonderful medical physicians & staff have kept me alive!
    Now let’s get to that question, (a question that I am not expecting you to personally answer)…
    When a woman has breast cancer, insurance pays for the mastectomy as well as the reconstruction, providing new (and often better) breasts! Why is it that the insurance universe doesn’t regard someone’s mouth as important as one’s breasts? Each time I wanted the insurance to pay for any reconstructive process they deemed it as “cosmetic”.
    I had beautiful straight teeth with very few cavities my whole life. Any deterioration was from the cancer — the same cancer that causes breasts to be removed and reconstructed–all paid for by one’s insurance.
    An obturator or denture attached to a palate prosthesis is not cosmetic. One needs it to speak and eat so food or liquid doesn’t come out their nose. Removing trismus from your mouth isn’t cosmetic; it is necessary so you can open your mouth hopefully wide enough to fit a cracker in…
    So many people with oral cancers are experiencing these problems. It is overwhelming and many are too sick and often die before any help or resolution is received from their insurance carrier. It seems as if oral cancer is only newsworthy when someone famous gets it like Michael Douglas or Roger Ebert. When their insurance companies refuse to pay for their obturator dentures, they don’t fight about it because they are wealthy enough to just pay for it themselves. They need it to speak & eat so they are not humiliated and can be presentable to the public but what about the average person who doesn’t have an extra $30,000 for an obturator denture.
    I am happy that breast cancer survivors are being helped. I just would like some of the same consideration towards oral cancer patients as well. Thank you for reading this.
    Marie Fisher

  7. HDinOregon says:

    Dear Marie,

    Thank you for your kind comments and good wishes.

    I am so sorry to hear about all the horrors you went through with your particular cancer treatments!

    As to your questions, I fully agree with you! As part of any cancer treatment resonstructive surgery should automatically be covered by the insurance companies. – I am not at all surprised that they try to weasle out of that any way they possibly can.

    Have you tried asking your doctors to write a letter to the insurance company indicating how medically necessary your reconstructive cosmetic surgery would be. Often the voice of a medical professional can put some weight behind your request. If you can get more than one of your doctors to write, so much the better.

    Also, we have noticed that talking to the first person on the phone of an insurance company is usually a clerk who is mimimally trained in a few minutes and barely can read off what is written on his/her computer screen. Escalating to a supervisor or a medically trained person is often needed to get some understanding or even “action” out of them.

    Another possible thing you could do is to try to find other patients with a similar cancer as yours, and see how their insurance handled the reconstruction issues. – Being able to say, but company so-and-so paid in a similar case, will hopefully give you additional leverage.

    The state of the health insurance situation in this country has been in the news a lot lately, and I don’t want to go into politics, – but some of the “bureaucratic hurdles and procedures” they use are, in my opinion, plain inhumane and not worthy of a great country with the stature of the US.

    I sometimes talk about my I²S² or “insurance induced stress syndrome”, to me it is a very real disease! And I can tell, you seem to know all about it too.

    Hopefully you can get some help for your issues soon.

    Hang in there!

    {{{ Hugs }}}

    HD

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