2013: The Year of Clean Up

John and ColleenA year ago today we were still waiting for after the first of the year for the biopsy that would identify the worrisome lump in John’s neck as metastatic HPV + squamous cell throat cancer.

With the past year of crisis behind us (and I am working on a post that details our journey through 2012′s diagnosis and treatment) we are now facing what we’ve come to think of as The Year of Clean-Up.  Throat cancer hit our lives like a devastating natural disaster, plunging a 54 year old physically fit and healthy man into surgery, the strongest and longest dose of radiation given for any cancer, chemotherapy and recovery. The crisis has passed, and continuing to clean up the mess will be tho focus of our next year.  We focus on this with gratitude for the doctors, friends and family that made it possible to be here right now.

If there’s one thing we’ve learned from this past year of crisis and challenge, it’s respect and amazement for how adaptable human beings are to drastically changing circumstances.  John went from hale and hearty to months of being unable to work, eat, or even literally see the world as he was used to seeing it.  If you had told John a year ago that he would lose function in his shoulder, would be unable to work out as he used to, would need a machine at night to breathe properly and would see the world like something out of a Peter Max illustration he would have been utterly freaked out; but then, a year ago at this time he was freaked out about potentially dying from cancer.  After the first flush of relief that his cancer was treatable and curable he was then freaked out about some of the worst side effects of throat cancer treatment that never came to pass, like losing his ability to speak or swallow or work again. Nobody knows how they will be physically, emotionally or spiritually tested in a crisis like throat cancer, and nobody knows what they will face or how they will face it.  But I am here to tell you that however this journey plays out in your life you can and will adapt and resume your life, however changed it might be.

John’s journey began with a biopsy on Jan 4th, 2012, a lymph node dissection surgery on January 26th, and the last of his 35 radiation treatments on April 20th.  Instead of three chemotherapy sessions he only had one, due to an unusually neurotoxic response I’ll describe below.  His follow-up PET scan was NED, sweet-talk for “No Evidence of Disease.”  Our term for this is, cured.

THE EXPECTED ISSUES

John is dealing with some of the expected outcomes.  His sense of taste, while improving, is not all the way back.  Eating is still more of a chore than a pleasure, and meat remains the hardest substance to chew and swallow, having a consistency like cardboard.  With the exception of strongly spiced or peppery foods, though, he can eat just about anything, and amazed me over Thanksgiving week in Mexico on the occasion of our 25th Wedding Anniversary by eating an entire Mexican platter including chile rellenos!  

Thanksgiving and 25th Anniverssary in Puerto Vallarta

Thanksgiving and 25th Anniversary in Puerto Vallarta

He’s back at work full-time, off of all medications, and has started working out at the gym again.  So there is a lot to grateful for!

Dental Issues

John was lucky to have a great set of chompers going in, with only a few cavities filled over a lifetimes.  During the radiation treatments he wore a custom-fitted dental appliance usually used for teeth whitening.  This was filled with fluoride gel and held in place for 20 minutes, used daily during radiation.  Since the end of radiation he’s had gum recession for the first time in his life and still can’t use toothpaste with strong mint flavors.  He uses Sensodyne toothpaste and rinses with Xylitol, as recommended by his dentist and which has anti-bacterial properties.  While John never entirely lost his saliva during or after treatment (thanks to regular acupuncture treatments) he is still deficient in the thin saliva, which makes it much easier to get cavities.  We discovered that John was also clenching his teeth at night die to sleep apnea (discussed below) and this was causing the rims of his front teeth to become jagged with little bits of tooth breaking off…an alarming development to be sure.  His dentist sanded off the rough edges and filled nine cavities in the front teeth that had suffered breakage, and his smile looks normal again.  In the process, though, his dentist found five more cavities along the sides of the molars where the gums had receded, so there’s another round of cavity-filling coming up soon.  We expect to see more cavities and more fillings in the coming year, but at least he has teeth to fill!

THE UNEXPECTED ISSUES

Ironically, the greatest problems John has had as a result of treatment were unexpected, unpredictable, and highly unusual, to say the least.  He tends to react strongly to medical treatments; something we didn’t know because he’d never been sick with anything worse than bronchitis before this.  Some of these problems are clearing up, but with others it’s unclear to what degree there will be recovery.

Nerve Damage

While recovering from the lymph node dissection on January 26th John complained about shoulder pain on the side of the healing incision, and it was difficult for him to raise his arm up over his head to brush his hair.  Amazingly, he was back to chopping wood for the fire within a week of his surgery, so we thought this pain and limitation would be temporary. Turns out, we still don’t know.

John’s course of 35 radiation treatments was done on a new protocol, 6 times a week instead of 5 days a week.  This meant he had radiation treatments twice on Thursdays, once in the morning and once in the evening.  About three weeks into his radiation, and two weeks after his one (and only) chemotherapy infusion, the muscles around his right shoulder quite suddenly atrophied, looking quite deflated.  His right shoulder drooped and his right clavicle stuck out dramatically.  During this time John wore a tank top to his various appointments as his skin was becoming quite red and painful, and when he took off his outer jacket to show his ENT the sudden change in his right shoulder I saw the sad, worried look in Dr. Sprague’s eyes. “I hope that comes back,” he said quietly.   No one could agree on why it was happening.  His surgeon said the he’d had to “stretch” the accessory nerve a bit to get it out of the way of cancerous lymph node but thought the radiation was responsible but the sudden atrophy.  The radiation oncologist thought it was from the surgery.  I thought it was from the chemotherapy, since he’d had so many other neurotoxic effects from it (see below).  Neither of us cared at that point what caused it– what we wanted to know was what to do about it.  Everyone agreed he would need physical therapy, and that couldn’t start for several weeks until the radiation was over and his skin healed.

John started physical therapy three weeks after the end of radiation, and at my insistence had an EMG (electromyogram) at the end of May to test nerve transmission.  He shoulder hurt dreadfully from just hanging there, but he had full use of his hand and lower arm.  He couldn’t reach up over his head without “assisting” with the other arm.  After testing the nerves he was told that there was no reason why the muscles couldn’t recover within a couple of months.

scapular brace

John models the brace that keeps his right scapula from “winging” out

But they didn’t.  John has been to two physical therapists, a shoulder specialist in the San Francisco Bay Area, a neurologist, and has had another EMG.  Three of the muscles around the shoulder girdle (the trapezius, supraspinatous, and rhomboid) are non-functional due to accessory nerve disorder.  There is no corrective surgery to be done, no special exercises or workouts to bring back the muscles.  They are unaffected by acupuncture.  Once of the long-term side-effects of intense radiation is the formation of fibrous tissue, and John works with a rolfer who does deep massage to break-up the fibrosis in his neck and shoulder on a regular basis to prevent further damage or construction.  He has ordered a brace to hold his scapula in place because it “wings” out without muscles to stabilize it. We work on moving his arm through range of motion exercises nightly so that his shoulder maintains its mobility and doesn’t freeze up.

We haven’t given up on it, though.  The neurologist he saw in early December  said that he shouldn’t give up hope for up to two years, and to keep working with it and encouraging any signs of life.  John feels certain that he will “get his arm back.”  This will be our greatest clean-up project over the next year.

Without regret, and knowing he made the best decision he could at the time, John says that knowing what he knows now he would not choose to have the lymph node dissection surgery, since that isn’t part of the standard treatment protocol and it appears that is where  the original damage to the accessory nerve occurred.  While this doesn’t interfere with his work, his shoulder aches all the time, he’s learning to use his left arm for lifting and reaching, and he’s having to find other ways to work out, as his old weight-lifting and pilates routines are no longer possible.

Sleep Apnea

During treatment John began snoring but in the summer the snoring took on a truly alarming timber.  He’d gasp and thrash and sometimes hold his breath for long periods of time.  I would wake up to see his entire abdomen jerking up and down spasmodically,  shaking the entire bed, and I’d shake him until he’d finally take in a huge gasping breath.  Around this time he was becoming discouraged and not feeling any better, at feeling foggy all the time and “not in his body.”  In what was a major cause of frustration for me this took a ridiculously long time to get seen to, diagnosed, and treated.  It was just assumed that of course he didn’t feel like himself with all he’d been through.  He needed to give it time, up to a year, to recover.  Here’s  what I want to say to fellow caregivers:  If something doesn’t feel right, it’s because it isn’t right.  Trust your instincts and continue to push for answers.  We finally got John in for an overnight sleep study at a local clinic.  They woke him up two hours into the study (he’d had 99 “events” of  stopping breathing and of his blood oxygen dropping to dangerous levels that can lead to heart attack and organ damage) and put a CPAP mask on him. His sleep study showed that he wasn’t ever getting into the deeper levels of sleep.  No wonder he felt so terrible!

Dr Sprague looked down into his throat and said that the trouble breathing at night was caused by obstruction from ongoing swelling at the back of the tongue and in the throat. Apparently John didn’t have a lot of clearance to begin with, and when he relaxed at night and his tongue fell back and obstructed his breathing. Sprague guessed this will clear up in 6-12 months as John’s throat continues to heal.

John was initially reluctant about the whole C-PAP idea.  What he had heard was that it is noisy, uncomfortable, and your wife won’t sleep in the same room with you any more once you’re using it.  I pointed out that I was  already spending far too many nights int he guest room trying to get some sleep of my own while he bucked and thrashed and gasped.  Finally, two weeks ago he brought home a portable CPAP machine.  CPAP stands for Continuous Positive Air Pressure, and it works by forcing room air into the mouth and throat to keep them open and unobstructed.  Rather than the huge mask covering his mouth and throat, he was given a small mask with straps around the head and two soft silicon plugs that go up into his nostrils, much like the oxygen cannula you get in the hospital but that completely covers and seals the nostrils.  Once in place, the machine itself makes not a sound.  Water is added to the unit for a misting affect so that the device doesn’t create more dryness in the mouth and throat.

And here’s the thing…John sleeps all night now without bucking like a bronco.  All is calm and peaceful, he is beginning to dream again, and wake up refreshed, and feel like himself again.  What a difference a good night’s sleep makes!

John’s dentist also guessed that the damage to his front teeth was happening during the apnea episodes when his teeth would come together with a snap, shearing off small bits and wearing away the enamel each time this happened.  I haven’t heard of anyone else having this issue after radiation, but be aware if you’re hearing breathing problems at night.  It’s worth looking into!

Weird Visual Aftereffects

One of the stranger things that happened was an extremely rare side effect of Cisplatin that happens in less than .12% of patients.  John was given Cisplatin overnight in the hospital so it could be dripped in slowly and his reactions closely monitored.  Nausea was controlled and his kidneys were fine, so he was sent home on Saturday morning.

On Sunday he was sitting in the reclining chair looking out the big picture window on a clear sunny day and asked me if it was raining.  Whaaaaa???  In his visual field he was seeing what looked like diagonal sheets of water pouring across the sky….only he also saw it when he looked away from the window.  His ears were ringing and his feet were burning and numb.  Because Zofran, the powerful anti-nausea medication John was given could also cause serious visual disturbances (“hopefully temporary”) he was taken off of it and as a result spent the rest of the night vomiting, becoming dehydrated.  I got him in to his oncologist the next morning who had never seen anything like this.  It was, he said, as if John was reacting to months and months of chemotherapy instead of to a single session.  The truth is, people vary in their ranges of sensitivity to drugs, and we discovered that John is highly sensitive to drugs.  He tends to react on the far end of the spectrum.  The oncologist checked John’s bloodwork (all of which was normal)  and set him up for an infusion of fluids, and when John’s vision didn’t clear up that day or the next it was decided that this would be his only chemotherapy infusion.  (“Common sense dictates that when a patient has a severe and unusual response to a drug you don’t repeat it,” his oncologist noted dryly.)

The diagonal sheets of water in John’s visual field gradually became more like a light rain, then a mist, and then the “watery” aspect of the disturbance slowly abated.  His vision is normal enough that he can drive, read, and carry on, but it is in no way “normal.”  He can’t describe how odd and different it is other than to say it’s as if everything has a “neon halo” around it and all colors are weirdly brighter and stronger, but he’s gotten used to it.  The tinnitus is also still there but most of the time he manages to ignore it.

Some Final Thoughts:

If there’s one thing you learn from all this, it’s how adaptable human beings are to changing circumstances.  If you had told John a year ago going into this that his shoulder wouldn’t be working, he wouldn’t be able to work out, he’d need a machine at night to breathe properly and his visual world would look like something out of a Peter Max illustration he would have been utterly freaked out; but then, a year ago at this time he was freaked out about potentially dying from cancer.  After the first flush of relief that his cancer was treatable and curable he was then freaked out about some of the worst side effects of throat cancer treatment that never came to pass, like losing his ability to speak or swallow or work again. Nobody knows how they will be physically, emotionally or spiritually tested in a crisis like cancer, and nobody knows what they will face or how they will face it.

But face it you will, one step at a time.

Posted on December 19, 2012, in After-Effects and tagged , , , , , , , , , , , , . Bookmark the permalink. 8 Comments.

  1. Thank you for sharing your inspiring story. You are both incredible amazing individuals. God bless you both. Love and Aloha, Eva

  2. Michelle Munk Huerta

    Thank you for sharing with us, Collen and John. Prayers and positive thoughts going your way. My 21 year old niece was just found cancer free for a complete year after a long round of different treatments.

  3. Thank you for this blog! My husband starts his first chemo Monday. I’m reading all I can, as fast as I can.

  4. I’m pretty delayed on this comment, but I just wanted to thank you for your detailed insight! There can never be enough information out there – and those of us who have undergone the same treatment, or are expecting it in the future are lucky to turn to blogs, etc. with such great advice.

    Thank you.
    I also blog about journey with cancer and my work as a cancer advocate here: annehutchseon.wordpress.com

  5. Thank you. We are in the midst of the last 6 treatments. His pain is awful but his mood is worse. Last week he actually told me he wanted a divorce “when this is all over” and then calmly asked me to watch a football game with him or a funny commercial. I feel like IM on drugs for goodness sake. He takes Ativan, gabipentin, tremadol, sporran & can only swallow water uses his feeding tube for everything else. His mood is very dark and he’s pretty snappish and mean most of the time. Doesn’t talk much. He’s 45 and has been the love if my life but I don’t know if we will make it. I really don’t.

    • So sorry to hear it Chrissy. If it helps you at all John actually doesn’t remember a whole lot of what happened during the worst parts now. He was so out of it from pain and drugs. It’s hard for us to imagine just how difficult this is to get through such unrelenting daily suffering. The man you loved will be back some day.

  6. Hello, I highly suspect I have oral HPV and my doctors are not diagnosing me because I can trace problems directly back to ‘a kiss with the wrong toad’ August of 2013. ( A person whom acted strange and I suspect is intentionally spreading his illness to as many women as he can.). Anyways it seems to be rapidly invading my body since starting as a severe flu. Do you know how long it took to develop into ‘cancer’? Thank you for sharing your story!

    • undiagnosed– it takes oral cancer years, even decades to develop from HPV infection. The initial symptoms of throat cancer are not flu-like; they are most often a hard lump in the throat and sometimes chronic sore throat.Please do get checked out but know that less than 1% of people infected with HPV 16 go on to develop throat cancer.

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