Category Archives: finding out

Oncology Nutritionist

I’m finally able to talk with the Nutritionist in the Oncology Department.  This appointment can be done by phone.  Nutrition is simple, right?  It should be.

She confirms that I’ll be going through “chemo/rad.”  OK, so this is the shortened form name of the therapy.  I like it.  Chemo/rad.  Would have a slightly nicer ring without the chemo part.

Then, as any good nutritionist, she wants my height and normal weight.  I tell her I’m right at 6 foot even and that I haven’t weighted myself in years, only occasionally with cloths on — figuring I always weighted about 160 lbs.  However, because I’m being more selective in the past few weeks about what I gulp, (and a new digital scale?), I’m weighing in down in the lower 150’s, 153/154 somewhere in that range.

The challenge during radiation treatment, I’m told and have read, is keeping weight on (not that anyone would want to go through this as a weight loss plan).  She asks me right away if I’m getting a PEG (feeding tube in stomach), and I say yes.  She tells me in rare cases, some have not needed them, but most do.  Getting the tube put in is kind of like an insurance policy.  If you don’t use it, great.  If you need it and you don’t have it, then you could be in big trouble.  And in my case, the chance of needing one is relatively high.

Being at the low end of the weight scale for my height, she tells me I can’t afford to loose weight during this process.  In fact, I may want to consider bulking up a little prior.  This morning I weight in at 149 lbs, the first time I’ve ever seen myself on a scale under 150.  I don’t feel any lighter, but the scale told me otherwise.

The Nutritionist doesn’t tell me a whole lot, but she does send me a recipe for a high caloric, high protein smoothie.  And, she does tell me (without calculating my metabolic rate which she cannot know), that I need to consume about 2,300 calories daily to maintain break-even.

Since I’m not eating animal flesh and no dairy (except for some whey protein isolate), protein is important and needs to come from somewhere, which in a routine diet might come from lots of whole vegetables, nuts, seeds, soy products, (and fruits).  But I’m not in the routine.  She, and others also recommended a product called Ensure (which I’ve never heard of).  Supposed to be covered by insurance.

Actually, I believe the Hammer Nutrition products I take for cycling are among the cleanest high caloric, balanced supplement products on the market.  Just bought an extra large container of Recoverite for routine use.

Whatever I take (in), the important thing is monitoring and maintaining my weight as chemo/rad burns extra calories and it’s ultra-important that your body regenerates new cells (as others are killed).

Therefore, I may want to invest in a juicer, in addition to the blender that I now use more than once a day.  And, I’m hoping I don’t tire of the broth-type soups I’ve been eating (drinking).  It’s so much easier gulping something and so much less tiresome than chewing.  A real pain in the neck.  Rad.

pre-radiation dental

Back to the oncology department, this time to see the dentist.  I fill out all the routine forms even though I’ve filled all the same forms several times already, in the same office.  Every doctor needs his own set of forms I’m told.  So while I’m filling in (or out) the forms, the receptionist takes my health care card to make a copy.  Then she proceeds to loose it.  That’s right.  Went in to a medical appointment with my health card, came away without the card.  Lost, in the depths of reception.

Anyway, I’m lead in to see the dentist and he looks thrilled to be there (not).  Looks like it’s a job to him, not a passion (his years?).  The dentists I go to in Colombia, they have passion, always energetic and smiling.  Regardless, as has been told to me, radiation does some heavy damage to the jaw area.  Having extractions post radiation, no matter how many years later, can be complicated.  Ugly might be a better word.

To prevent ugly, it’s important to be super diligent about dental care he tells me.  One big change is that I’ll now need a prescription toothpaste.  A special highly fluorinated toothpaste.  He immediately writes me a ‘script for 12 refills (limit).  A prescription toothpaste for life.  Must be dangerous stuff, can’t be sold over the counter.

And, after brushing, the rule is, not to rinse for 20/30 minutes afterwards.  That means no brushing right before bed because, apparently, you will want to rinse after the 20/30 minutes.  This might be a good time to work in the tongue and throat exercises.

Additionally, he takes molds of my upper and lower teeth so I can wear plates during radiation.  I have yet to discover whether I’ll need to use these at any other time.

The good news is that I can have regular dental work, cleaning and routine fills.  But no surgery and no extractions.  That’s an incentive not to forget to floss again.  I go back next week to pick up the finished mold.  So exciting.  Next appointment is the nutritionist in the same department.

to tell or not to tell?

In the book 100 Questions & Answers about Head and Neck Cancer, the authors recommend involving family, mostly from the practical angle, as cancer usually affects the entire family.  More pertinent, of course, to families who live together, or at least interact together on a regular basis.  In my case, family is physically distant so practical support would be minimal or nil.

As a public figure, Michael Douglas did the right thing making full disclosure about his throat cancer.  As he has most of his career behind him, announcing his disease to the world will now allow him to be a mentor, bring light to this disease, and in certain cases, in a slight way, let others with the same affliction feel somewhat better knowing someone going through the same thing.

However, as a non-public figure, the last thing I want to do is announce to everyone I know that I have throat cancer.  Coming full disclosure to the people I work with doesn’t seem particularly prudent.  Those who might consider hiring me for a job may think twice about someone with cancer.

From a practical standpoint, my life partner will provide all the support I could need.  She will be (and does), cook up/blend up whole, nutritious meals.  And, she’ll be giving me most excellent foot reflexology therapy during the process.  From the emotional support standpoint, she is extremely positive and will do anything to keep that positive energy flowing.

Back to the family.  My brothers and sisters and my offsprings are spread all over.  We might see each other once every two years at most.  And, it’s not like this form of cancer is genetic, so there is no risk to them in not telling.  But as it says in the above mentioned book, not telling them could lead to offending them.  But that brings up an entirely different philosophical area, i.e., one doesn’t control other’s feelings, blah, blah.

Regardless, my sibs, parents, kids, are all downright smart individuals.  There may be something they bring to the table that my shortsightedness won’t focus on.  So perhaps what I’ll do is drop them a line, at once in the same email, inviting them to share this blog.

the speech/swallow therapist

She is doctor Kathy Lazarus of Beth Israel Head & Neck Oncology.  Keeping all the mouth, tongue, throat parts moving properly during radiation is key to post radiation functioning, she tells me.  But first, she needs to baseline me.

First test is chewing a piece of gauze for two minutes to measure saliva content.  As she weighs my soaked gauze ball that I spit into the cup, she tells me that I’m her record.  She’s never had anyone over 9 grams of saliva in two minutes.  She says it’s good.  I’m glad something is good.

Next is tongue strength.  Not so good.  My tongue is weak she says, considerably.  And, probably due to the tumor on the base.  I do some voice stuff, a,e,i.o,u type stuff into a recorder for later.

This meeting is mostly about exercises I’ll need to due during radiation.  All about 2 second reps, in sets of 5.  Need to work out the tongue and adam’s apple at least 15 minutes, twice per day.

Then she asks me how often I go out to eat.  Never I say, this is New York and I’m bootstrapping it doc.  Starting over with new home spun businesses hasn’t resulted in net positive cash flow just yet.  Soon I hope, after the radiation.

the chemo guy

The chemo guy on the team is Dr. Bruce Culliney.  I went through my story first with his nurse, and then with him.  The story is important as it helps entire picture clarity.

He explains that the chemo drug I’ll be receiving is Cisplatin (trade name: platinol), which is platinum based.  The principal purpose of the chemotherapy drug is to enhance/promote the effects of radiation.  It also kills any residual cancer or tumor-type cells anywhere in the body (along with other good cells it accidentally kills along the way).  The program is three does: once the first day of radiation, once in the middle after three weeks, and once at the end (of radiation).

The side effects of nausea/vomiting, kidney damage, decreased blood count, hearing loss, electrolyte depletion, (and so on) are minimal (normally), and (to a point) controllable.  What he prepares me for are the side effects of the radiation, which become more severe with chemo — i.e, acute soreness in throat, very difficult to swallow, dryness of mouth (saliva glands getting bonked), etc.  Basically all the things that the radiation guy told me.  It’s good to have it repeated though, as it minimizes the chances of heading into treatment with a rosy picture.  The only thing rosy will be the color of the inside and outside of my neck.

The chemo guy explains that for each dose of chemo, I’ve got to spend a night in the hospital — a precautionary measure in case of kidney failure.  So my schedule for radiation begins Monday at 845 am on Oct 4th (2010), I’ve got to show up for radiation and then immediately check into the hospital.

During the first session of chemo, when conveniently in the hospital, is when I’ll receive the hole in the stomach — which they call a PEG (Percutaneous Endoscopic Gastrostomy).  Not so thrilling to think about, but I’m guessing, knowing how hard it’s been at times to swallow, that this will be a smart alternative to taking in nutrition towards the back half of treatment.

So we banter a little bit more, then he has one of his assistants draw some blood for additional base line measurements and I’m out of there.

two test results

Doctor Adam Jacobson, the surgical oncologist, is the point guy in all of this.  He’s also the one who will slit my throat after radiation treatment to take out any residual malignancy in the lymph node area.   He calls me on Friday afternoon to give me the news of two test results.

FINAL BIOPSY PATHOLOGY

First, the final pathology results of the biopsy show HPV is positive.  If I’m ever glad to have a virus, it’s in this situation.  In short, HPV caused cancer supposedly responds better to chemo and radiation, therefore improved chances for cure.

HPV or Human Papillomavirus, is family of viruses.  Although this virus is fairly common these days, and can remain in the body for years and go away on its own, there are certain types of higher risk strains that can develop into cancer, the most common being cervical cancer in women.  There has been a growing number of infections that have manifested in men as cancers of the neck and base of tongue.  Although smoking and drinking is the number one cause of throat cancer, a not so distant second is HPV in men.  Apparently, I was lucky enough to have this high risk virus that manifested itself as base of the tongue cancer.

The connection with the women’s cervical type is kind of like a foot-in-mouth analogy.  Kind of.  Regardless, it could have been there for years, and takes years to develop into cancer.  I’ve certainly lived in enough suspect places in the world, although this is a first-world virus.  Anyway, at this point it’s good news because it improves the chances of recovery by about 25% over non-HPV causes.  It sure is weird to feel good about having a virus, but in this case….

PET CT RESULT

Second, he tells me that the results of the PET CT scan show nothing abnormal below the neck.  No cancer activity in lungs, liver, etc.  The cancer activity is limited to the tumor in the base of tongue/neck area.  Also good news.

Thanks Doctor Jacobson, with the way the throat has been hurting, and now the inner ear, this good news is more than welcome.

Now if my throat will hold up this weekend, and the weather will do the same, perhaps I’ll be lucky enough to do the New York City century ride on Sunday.

the simulation

The simulation appointment is for Friday, Sept 10, at 9am at the Beth Israel building at Union Square.  The radiology oncology department is in the basement (the pattern — all radiation done in basements).

The department and waiting room is nice, much nicer than the hospital.  The appointment is on time, wow.  I’m taken in a room by a nice therapist and she sets up a mini dvd for me to watch so that I know what to expect.  They called me the evening prior and told me that this would be contrast and not to eat anything prior — ok, no problem.

So after the interesting little dvd, I’m lead into (one of the ) CAT scan rooms where I’ll be fitted for a mask.  It’s super important that everything is lined up precisely if cells are going to be fried.  And this mask is what will hold my head in place for the duration of the radiation therapy.

Nothing is painful, although it is definitely work lying still with a popsicle-type device between your teeth and your head pinned down tight and told to lay still for 30 minutes.  The one challenge was swallowing accumulated saliva with your mouth open and a thick piece of hard foam between your teeth.

A nurse come in, makes an IV in my forearm and the contrast is started so that Dr. Hu can make the set up as precise as possible.  I ask Dr. Hu if he will be that afterwards as I had a few questions.  He said it was his day off and yes, he would be there for a while.

After the fitting and CAT scan, they make some freckle-type tattoo marks at various points on the face and neck to make sure the helmut-type mask is fitted in the exact position each time you get doused with radiation.

After the tattoos, I asked to see Dr. Hu and was told he left.  So much for my questions.  He is off next week so I can’t blame him for wanting to get out of there.  After all, he is trying to “fit me in” and get this done prior to his planned vacation.  (although I don’t know how anyone plans to have neck cancer).

Walking away from the simulation with the radiation schedule.  Begins on October 1, which seems like a long way off — practice run with an X-ray and last minute adjustments.  First full week begins on October 4th, which means I should be all done by Thanksgiving with the intensive stuff (not that on Thanksgiving I’ll be able to swallow or taste anything).  Oh, and wasn’t lucky enough to draw my preferred location for the radiation, Union Square.  Instead, I’ve got to go across town to the hospital on 1st Ave.  Not complaining (too much) because the time is good, 845 am every day.

the PET Scan

The first scan I ever had done was last month in Colombia.  I was told to get a tomografia and had no idea what that was.  Had to be done with contrast — a dye injected into an IV and pictures taken of my neck area.  Tomografia = CAT Scan.

This time though, it’s a full body scan with contrast and radiation.  The purpose of this test is to see whether any of the cancer could have made its way to any other part of the body, i.e., lungs, liver, etc.  Therefore, for best results, it’s important to be on low carb diet the day prior, and especially low sugar.  The contrast injected reacts with sugars in the body and “lights up” any high metabolic areas, and cancer cells tend to light up with sugar (metabolic activity).

My appointment is at noon so no eating or drinking anything except water that day.  The wait for this appointment was not so bad, only 45 minutes.  Still.  I’m lead into a room where I’m given an IV set up, then injected with radiation.  Next is relaxing in another room for about one hour so that the radiation circulates through the entire body.

After the relaxation period, it’s to the CAT scan room, head taped down and now the IV is flooded with contrast dye, then the pictures begin, for about the next 25 minutes.

Overall, quite painless, the only investment being a couple of hours.  Now it’s waiting for the results.  My next big day is Friday, the simulation (whatever that is).

the radiology oncologist

One of the next appointments was with the Radiology Oncologist, Doctor Kenneth Hu.  He works mainly out of Beth Israel’s radiology department at the hospital on 1st Ave and 16th Street, in the basement.  They fit me in at 230 pm the Tuesday after Labor Day.

After sighing in, this time the wait was about 2.5 hours.  First saw his assistant, who went through many years of medical school and was in her second year interning with Dr. Hu.  Said one year was sufficient for her requirements, but she wanted to stay another year because Dr. Hu was one of the best.  Another boost of confidence.

So in comes Dr. Hu and after asking me what I did for a living (sales, I say,…after all, aren’t we all selling ourselves non-stop?), he says “so I guess appearance and speaking are important to you?”  I’m glad I was sitting for that question.  In the nanosecond it took me to respond positively, I did a quick scan of human population to come up with someone (a group) who would not think appearance and speech was important.  (I drew a blank, but may have needed more than a nanosecond).

He hears my story, why I’m there, looks through my chart(s), then starts exploring.  Sticks, fingers, then the scope through the nose again.  I’m glad for all of it.  He tells me that the reason I may have this cancer is due to HPV and that biopsy pathology may show this once it’s complete.  If so, it may be a good thing.  Regardless, as much as he can conclude, I would need seven weeks of radiation, followed by seven weeks off, and then a brachytherapy boost (24 hours in solitary in the hospital with focused radiation implanted behind my tongue), and surgery on my neck to take out any leftover lymph nodes.

Then he starts the initial preparation of letting me know what to expect.  Starting radiation, they would insert a feeding tube in my stomach.  Yes, a hole is made from the outside into the stomach.  The tube would be tapped to the outside of the stomach when not in use.  He says that even though it’s not needed for the first couple of weeks, it’s important that it’s there and that I get used to using it.  Why?  Because after the first couple of weeks, apparently the throat gets fried and it becomes very difficult to eat.  And, it’s important to keep nutrition flowing through this process.

Radiation, as focused as it can be, will kill good cells as well as bad.  Therefore, it will more than likely kill the saliva glands on at least one side of my mouth.  Afterwards, the mouth becomes abnormally dry most of the time.  If the gland on the other side is not wiped out, then the good gland can make up for the entire mouth (kind of like the body can function on one kidney), but it would take up to a year or more.

I’d also need to see a speech and swallowing therapist.  During the process, apparently, it’s important to practice swallowing so that one doesn’t loose the adams apple function (thyroid cartilage).  In other words, I might be inclined to want to use the feeding tube, and in fact should, but I had better work on swallowing exercises so there is no problem later.  There won’t be any motivation problems in this department I’m thinking.

Also, because the radiation is pointed into my face and neck, I would permanently loose parts of the hair on my face (where one shaves), which would not be so bad if it could be made in the shaving pattern.  But, where the radiation comes out the back side of the head, I would likely loose hair there, but that would be temporary.  And, because radiation enters the jaw, I’d need to see a dentist to make sure that all the teeth are healthy because extractions after radiation are dangerous and can fracture the jaw bone.

He did say that during the seven weeks of therapy, it is good to be active and that active patients do better than non-active.  Although, I may want to plan on not working for a month or more.

Both Dr. Hu and his assistant are super nice, patiently answering all my questions, even though it’s evident from the waiting room outside that they are extremely busy.  So they give me a book, “100 Questions & Answers about Head and Neck Cancer” (Dr. Kenneth Hu is one of its authors) and we shake hands and he tells me he will try to schedule me that Friday for simulation (getting fitted for a mask).

Outside the hospital, I unlock my bike and head home, trying to digest, without tubes, all the information I’ve just been given.  Tomorrow I’ve got a PET Scan to look forward to.

the biopsy

So I’m told by the surgical oncologist (Dr. Adam Jacobson) that I probably have a cancerous tumor in my throat. But, to be sure, of course we need to do a biopsy. Because the tumor is in an awkward position, this has got to be done in a hospital under general anesthesia. Great. That’s, I’m sure, much better than having scissors or a needle stuck down my throat. This is the third week of August (20th), on a Friday. The doctor is out next week and I have a trip planned tomorrow to South American anyway.

While in South America, through my wife’s contacts, I meet two different bio-energy medical specialists. Both guys are medical doctors, studied and practiced extensively, and had extended their fields into how the body operates in conjunction with its own energy fields. Coincidently, both doctors were in the two countries I was visiting. After showing them both my charts (of recent tests excluding CAT scan) and reviewing my history, they both, after exam, concluded that I indeed and should get the biopsy. Both, gave me strong recommendations of potions to take to strengthen the immune system (and contribute to future ideal energy alignment). And both highly recommended that I eliminate all meat from the diet, all diary products, and eliminate all processed foods, especially flours, sugars, pastas, etc. etc. OK, I’m not too far from that. (hoping they won’t tell me to stop coffee and I’m not asking).

During my time in South America this last week of August, my throat is hurting big time. Eating is a chore, a real pain in the neck. It’s the swallowing that’s difficult. And, after first starting to eat something, anything, there is a throbbing sensation, almost burning, that sticks around for a while until it ebbs somewhat.

The funny part of the sore throat this entire time has been that it’s moved around the mouth somewhat. Predominately staying on the left side, it’s moved from the back of the tongue to the top of the throat, to the middle, and at times to the right side. (which explained why the first ENT told me it was reflux and depended on which side and how I slept).

So I’m back in New York after one week in SA and arrive home the morning of August 27th (Friday) and the biopsy is scheduled for September 10.   The surgeon’s office calls me that afternoon to ask if I wanted to move up the biopsy to the 1st of Sept.   Sure, I say, let’s get this going.

My wife had friends in town from Paris, and the weekend forecast was beautiful, so I looked forward to a couple of days on the bike. On Saturday I headed up the the state line for a 45 mile warm up and afterwards felt unusually tired. As much as I tried, I could not figure out why.  The next morning early, I met a friend of mine up along 9W and we rode through Harriman Park toward Bear Mtn. I road a casual century that day and again, felt more tired afterward than I should have. So I jumped on the scale and sure enough, I’m lighter than I normal.  I’m now weighing in at under 155 lbs. I should be between 160–165.  At about 6′ even in height, I’m now feeling a little underweight, which gives me now another goal of increasing calories.

The biopsy is scheduled for 11am at the Beth Israel hospital on 1st Avenue and 16th Street in Manhattan.  My wife had a trip planned six months ago to Peru and she left on the 31st for 24 days.   She offered to stay, but I could hardly have her change her plans for a biopsy.  So she takes off on the 31st, and I head to the doctor’s office to have all the pre-surgery clearance tests done.

The next day, of course you can’t eat or drink anything prior to anesthesia.   As I’m getting ready that morning I popped on New York One on the TV (a rare event).   Putting on my shoes, I’m hearing a segment about Michael Douglas on Letterman’s show the evening prior announcing that he has throat cancer.  Freaky.  I’ve not heard of anyone with this and all of a sudden I’m going in for a biopsy that day and all over the news are clips about Michael Douglas’ announcement of throat cancer and the fact that he is going through radiation and chemo therapy.  For some reason, the whole thing is more unsettling.

Like a good patient, I arrived to the hospital slightly early.  Mistake.  Throughout this ordeal so far I’m learning that just about every appointment is a wait.  But how can I even think to complain, these people are trying to do good things.

I’m processed into the hospital, gown and slippers on, my clothes in a bag, and I’m escorted upstairs to the pre-OR room, where I’m given an IV and told to hang out.  It’s just before 11am, and the hang-out period is until 1pm, which is when I’m lead into OR, I lay on a table and they put me to sleep.

The next thing I know, I’m waking up in the recovery room and all I could think was “what the (expletive, expletive) happened to my tongue?”  My mouth was throbbing.  It felt like someone took a pair of pliers to my tongue and jammed (something) against the back of my throat.  I could barely talk.  The nurse was saying something to me, I’m listening, but just trying to process the pain in my mouth.

Because I was not accompanied, I had to wait for a while and luckily, a nurse took me outside and I hailed a cab.   They didn’t like the fact that I didn’t have someone escorting me, but that’s just the way it was.  By now it’s about 3 pm and I’m very hungry, not having eaten anything since yesterday (instructions).  I went to a jamba juice place around the corner from my apartment on 5th Avenue and ordered a mixed fruit smoothie. Wow, was that hard to get down.  I really felt like someone beat up the inside of my mouth.

That afternoon, the surgeon’s secretary called me to come in the next day for the results. Sounds good.  I’m anxious.  So the next afternoon I arrive at the appointment time, and after waiting the obligatory hour, Dr Jacobson tells me that it’s confirmed, the tumor is malignant.   I could un-cross my fingers now and let the realization settle in that I indeed have cancer.  And, that the cancer is a tumor in my throat.  And, I can’t dwell on it one second longer.  Now, it’s all about resolution.

The doc tells me that the typical program is 6-7 weeks of radiation/chemo and that the beginning isn’t so bad, but the last few weeks are tough.  The next couple of weeks is all about preparation, seeing the rest of the team.  During our appointment, I ask him why he works where he does, at Beth Israel.  He says that it’s one of the best places along the Eastern seaboard, if not the country, for head and neck oncology and because of that, BI in New York is where he wanted to be.   I guess if I could have felt any better, that fact gave me some confidence.

So I walked out of there, through the green market in Union Square, and couldn’t think of cancer, or buying anything at the market, because my mouth hurt so much from the biopsy.  But, I’m thinking, at least that’s over with.  I can head into Labor Day weekend finding liquid food or blending up something nutritious.

Luckily by Saturday, the tongue was starting to feel slightly better.  The black and blue and deep reds were gradually fading.   I was gargling a few times per day with salt water which helped.  I was good enough to at least get a 62 mile ride in on Sunday up to Nyack State Park.  Still, I noticed that I was not emptying the water bottles like I should.  But it just felt good to be out there peddling.