Category Archives: 6 1/2 weeks

radiation and chemo

w7/d1,2,3

Just went back and read my last posting and boy was I pouting.  I’m supposing though, for good reason.  The cumulative effect of daily rad adds up.  Especially in an area that is the major canal for receiving food and air.  And we speak through that canal.

Monday and Tuesday ended up being extremely heavy phlegm days.  When I did leave my apartment, I was stocked with paper towels into which I could hack and it seemed that hacking was required about every block.

They’ve now given me prescription skin cream normally reserved for 2nd degree and higher burns skin burns.  And, neck is swollen in addition to being dried and bloched.

I’ve spent the last couple of evenings on the couch with a spittoon pale.  If I sleep on my side, I end up hacking nice balls of phlegm every few minutes into the pale.  If I sleep on my back, independent of angle, my mouth ends up opening and the throat canal drying out.  The result is I sleep longer but then the part that is dry strives to be moist.  And the phlegm that hadn’t come out seeks to come out.  It therefore becomes  a few sessions of involuntary dry heaves to get the phlegm pulled up.  Not a pleasant process.  In any event, the quantity or amount of phlegm that is manufactured is extreme.

But before we go to much further; CONGRATULATIONS.  I’ve finished my last day of radiation therapy today.  Yes, there is a delayed and cumulative effect, but no more treatments.  No more damage will be inflicted.  That’s kind of big.  Both the doctors during my weekly visits yesterday said that it’s “the next two weeks” that may get a little harder or be the same and after that I should see steady improvement.

So this is the last posting under this category of 6 1/2 weeks.  I’m giving myself a date of December 1st to feel, if not most excellent, at least significantly better.  It’s a goal, or a measuring point.  As much as I can simply respond to the unexpected, these next two weeks will be focused on nutrition and hydration, even if most is through the tube.  Both my mother and GV have been independently insistent on the benefits of breathing exercises.  Therefore, I’m going to commit to adding breathing and meditation as part of lifestyle. GV is setting up a consistent and fairly aggressive holistic healing therapy sessions.  And then of course there is exercise.  Western exercise promotes expending energy in an external direction (running, weight lifting, aerobics).  Eastern promotes pulling external energy inwards (thai chi, most forms of martial arts).  I’ll need to sort that out, but cycling will be part of the mix.

What I intend to write less about in the next two weeks is what I’m experiencing now, that being:

  • severely ulcerated tongue, mouth and throat
  • constant battling of large quantities of mucus and phlegm
  • constant fatigue due to pain med
  • swollen neck
  • can’t talk
  • achy head

Good by there 6 1/2 week rad and chemo treatment process.

weekend prior to w7

Yesterday was a beautiful sunny, seasonally mild day in New York.  Not a cloud in the sky and temps reading the low 60’s.  It was an ideal day to be outside.  For that reason there must have been something wrong if I was spending most of it indoors.  I woke up heaving and feeling overall kind of like garbage.  The new surprise has been the amount of mucus and phlegm that has overwhelmed the system.  I’m almost drowning on the stuff.  I can barely hack it up and spit it out before I’ve got to do it again.

With great disappointment, I had to cancel two short meetings that were scheduled for Saturday.  One in the morning with the owner of a factory from Peru.  We were supposed to have either breakfast or lunch as he was heading back to Peru in the afternoon.  The second appointment was with my niece and her bf who were in nyc for the weekend.  I was looking forward to their short visit, but ended up regretfully texting E and I knew she would understand.  I was just in no condition to meet and listen to anyone.

Saturday night was long.  The clock would not tick off the minutes quick enough.  Now Sunday, another nice day spent predominately inside.  I did manage to get to the River today, hacking all the way, for just a short while before it’s back filling the weekend spittoon.

One thing that did help emotionally through this all was receiving a couple of messages of support today.  With the way I feel, I really want to quite the last three sessions. Thinking of adding the damage that just three more sessions will do on top of the way I feel now is an easy motivator for quitting.  Of course that won’t happen and I’ll do the last three.  After that quitting is not an option.  After that it’s all mental.

w6/d5

Hit mile marker 30 today.  Only 3 more rad days to go.  And then, from what I understand, it’s wait it out in hell for a week or two, and then,…it slowly gets better. The mucus/phlegm factor has come on strong and in a hurry.  Don’t know how the body can manufacturer so much of it, but when it does it sure can. I’ve got to pity GV for having to put up with my continuous gagging sounds all day.

I made the mistake today of using magic mouthwash, which (somewhat) numbed my mouth, so I called a client.  He wasn’t there so had to leave a vm. Forgetting that I had not talked all day, I could barely eke out my name.  Embarrassing.  I should remember that Fridays are never good days to call clients anyhow.

Last night wasn’t such a good sleeping night.  I woke up every hour, almost on the hour and each time tried to gargle out the phlegm before it drowned me.  I heard from a doctor today the reason for the phlegm is that radiation kills the glands that keep phlegm at bay.  Lovely.  And, I heard from another doctor today, that there is medication given to prevent this which evidently I wasn’t given.  Sure would like to know why.

Right now I can barely keep my eyes open while seeing visions of dreams.  I’m calling it a day.

w6/d4

Finally hit the point where I’m rounding out the last week.  Won’t be going back to the rad room for any more thursdays.  That’s a big, little yahoo.

This morning the nurse almost talked me into an IV bag.  I came out of the rad room and she asks me yes/no questions about how I feel.  She then says that she spoke with GV while I was getting treated and she thinks it’s best to give me a hydration boost.  I’m not liking it but she talks me into it.

Part of my resistance was evident in the feeling I had about her giving me an IV.  Needles in the arm to draw blood is one thing.  IV’s with a catheter require wiggling the flexible small plastic hose end up into the vein.  And I have fat veins on the inside of the elbows so for a quick IV it’s relatively easy.  Anyway, just watching her set up it appeared that she didn’t do this often.  She was bumbling around so I just looked away.  I felt a couple of pricks and still nothing.  Then I felt the needle go in, then she feebly  got the IV turned on, and then realized she had to pull the IV out again.  Whatever she did, the catheter didn’t set properly and I had a small/large lump on my vein.  She wanted to try the other arm and I told her no way.  I’m just drinking lots of gatorade today and that’s the way it is.

The pain has definitely gone up a notch.  So between the localized pain, controlling the mucus/phlegm, and getting in some swallowing exercises, I have no illusions that the next few weeks won’t be a grind.

I finally found another product called Caphosol from JA’s (daughter) contact.  This is a saliva-like liquid that gets swished around the mouth for two minutes and it cuts the mucus and eases mouth pain.  I had a couple of samples and it worked well, especially in combination with the magic mouthwash.  However, I went to pick up the prescription yesterday and cost was $1,000 for 120 applications.  Prescription immediately cancelled.  I’m sure there is a reason that about one once of water-like substance costs $10 a pop, and that you can’t buy less than 120.  But no sense looking for rhyme or reason.

And the picture doesn’t do it justice, but I’m accumulating a nice radiation burn around the front of the neck.  This might work well for that winter, low neck line, been-in-the-sun look.

w6/d3

There just is not the kind of activity in the rad center this week and last as there had been for the first month I was there.  It must be low cancer season.  At least low season for head/neck cancers.

The nurses there really wanted to put an IV in me today as they thought I was dehydrated.  The blood tests from yesterday pm proved them wrong, so I got out of the trickle down effect.

All in all, a relatively quiet day and week.  Talking is more difficult today but there has been less pain spurts.  Keeping talking to a minimum helps.

 

 

Anyway, if the rad folks were to chart out a pain graph for those therapies that are daily, my guess is that they’d look somewhat like this time/damage graph.

 

 

On the mucus front, someone my daughter knows told me about a nice trick.  Another function of rad over time is mucus.  I’m sure that can be charted as well, but would probably follow a similar curve to the damage curve.

Anyhow, the girl she knows is now 26 years old and found out she had tongue cancer when she was 24 having just started teaching on an overseas assignment in India.  Her sore was also originally mis-diagnosed before she left the US, but the Indians sent her back home with the correct diagnosis of stage 4 oral cancer.  Reading what she went through is warrior stuff.  Life owes her back big time.

She said that ginger helps break up the phlegm in the back of the throat.  So she would open a ginger ale and let it go flat and the gargle with it.  I can attest that it really works and works well.  I’ve seen the evidence.  Yes, gargling with flat ginger ale helps pull out and break up the mucus in the throat.  What nice advice that was.  And now I’m stocked with Whole Foods ginger ale made with natural ginger.

w6/d2

Today was (is) the day for the weekly meetings with Drs Rad and Chemo.  They are in two different locations and at each one I get the vitals checked: blood pressure, temp, pulse.  At one they take blood.  They both note that I’m two pounds lighter than last week (and I didn’t tell them that today I took out my lead soles).  Neither doctor had to look in my mouth very long.  After a one second spot of the light, Dr Rad’s response, “oooo, that’s got to hurt.”  And Dr Chemo’s, “I guess there is no point asking if that hurts.”   Of course both are spot on.  My mouth is just about one very large ulcer.  The back of the throat is all white.  Same with the roof of the mouth in the back.  The sides of the tongue, all ulcer white.

Dr Rad says I’ve only got six more days and that each day it will get a little tougher.  And, for a couple of weeks after therapy is over the situation won’t change very much as the mouth/throat will still be reacting to the treatments.

I’ve got to be relatively careful managing the pain meds.  I woke up this morning and my pulse was racing.  After I checked, it was up around 145 bpm.  Very weird.  Same thing happened on Saturday around noon, but not quite as extreme but still, from rest, the pulse rate was between 115-120 bpm.   They think it could be lack of hydration or maybe too much pain medication, even though I’m still on the low end of doses.  I’m doing the 25 mg fentanyl patch and subbing with some oxycodone hydrocol when the pain gets intense.  Sometime, like about 30 minutes ago, the joints of the jaw will start hurting intensely, followed by the roots of the teeth and an all-round good headache.  It’s enough to sit me in a corner wishing I knew meditation techniques a whole lot better.

Anyway, the other news of the day was with Dr Chemo.  Because I still have the constant ringing in my head, he recommends that I forgo the last chemo treatment.  I wanted to reach out and give him a high five, but just slowly nodded my head in thoughtful agreement.  In all the cases they’ve done where the patient received two rather than three, there is no noticeable downside.  It’s just that the standard has always been three sessions.  The downside to going forward could be increased risk that 1) the ringing never goes away or 2) eventual ear damage.  If he thinks it’s a good bet to skip the last session, then so do I.

w6/d1

It’s so nice not to have started out today like yesterday.  Yesterday, first day of week six, was my first vomit day.  Here is was a nice Sunday late morning and I had finished downing a couple of cans of liquid brown and some asst liquid meds.  About 1/2 hour later, at the exact same time I was finally, after days, having a bowel movement, all of the stuff I put into the stomach via the tube came shooting out my mouth.  So difficult getting anything down the throat, but it sure does come up without a problem.  And fast.  And it’s a good thing I was fast and the little waste can next to the toilet had a bag.  Sorry for the not so eloquent pictorial, but this is a process diary.

So yesterday, instead of the six can equivalent day, it was a mere two can day.  Which only means that I’ve lost more weight.  Regardless, at least there was sun on the weekend and I was able to get the Hudson River both days for a little sunny riverside contemplation.

Receiving radiation treatment is a lot like doing most hard exercises.  Both put stress at the cellular level and cause damage.  And in both cases, after damage the body rushes necessary nutrients to the location to repair and rebuild the damaged area.  And if the nutrients are not available in the bloodstream (certain amino acids/protein), then it attacks muscle stores.  Hence, during the last month I’ve gone from being on the thin side to being just skinny.  And that’s not a tag any guy wants.

Back to today, rad session 26.  Today was actually the first time in this radiation process that the session started on time.  As usual, I was there at 10 minutes before the standing 7 am appointment time.  The old standby who is normally there is off for the next two days (her birthday).  As I’ve blogged a while back, OS has been doing this for 35 years.  The one who covered her shift today has been at if for about 15 years.

I asked how long only to check motivation factor.  Why was everything ready when I arrived?   With OS, nothing is ever ready on time.  When OS calls me, besides the fact that it’s always 15 minutes late (I’m the first appointment), nothing is set up, which is why I go about helping.  OS’s pace is about 50% of the one there today, I noticed.  Maybe that is because OS is trying to fit in a breakfast sandwich every day in the middle of her set up procedures.

Not that I mind her having a breakfast sandwich, that’s ridiculous.  But maybe the crumbs in the keyboards is the reason the machine goes down more than it should.

Liquid Brown

The day I started therapy, Beth Israel Med Center changed it’s recommended liquid diet to Jevity 1.5 (from Ensure?).  The little 8 oz can is called a calorically dense medical food.

The nutritional information for an 8oz can is as follows:

  • Calories 355
  • Proteins 15.1 g
  • Fat 11.8 g
  • Carbohydrate 51.1 g
  • Dietary Fiber   5.3 g
  • + 31 vitamins and minerals.

The lovely ingredients are:

  1. D Water
  2. Corn Maltodextrin,
  3. Corn Syrup Solids
  4. Sodium and Calcium Caseinates
  5. Canola Oil
  6. Corn Oil
  7. Soy Protein Isolate
  8. Fructooligosaccharides
  9. Medium Chain Triglycerides
  10. Oat Fiber
  11. Soy Fiber
  12. Potassium Citrate
  13. Calcium Phosphate
  14. Gum Arabic
  15. Sodium Citrate
  16. Magnesium Phosphate
  17. Soy Lecithin
  18. Magnesium Chloride
  19. Carboxmethylcellulose
  20. Acsorbic Acid
  21. Choune Chloride
  22. Potassium Chloride
  23. Taurine
  24. L-Carnitine
  25. Zinc Sulfate
  26. dl-Alpha-Tocopheryl Acetate
  27. Ferrous Sulfate
  28. Niacinamide
  29. CalciumPantothenate
  30. Maganese Sulfate
  31. Cupric Sulfate,
  32. Thiamine Chloride
  33. Hydrochloride
  34. Pyridoxine Hydrochloride
  35. Riboflavin
  36. VitaminA Palmitate
  37. Folic Acid
  38. Biotin
  39. Chromium Chloride
  40. Sodium Molybdate
  41. Potassium Iodide
  42. Sodium Selenate
  43. Phylloquinone
  44. Cyanocobalamin
  45. Vitamin D

Congratulations to these 45 ingredients which had lined up with hundreds and hundreds of others for various auditions to make the final list.  Many new comers with new-found names, not seen in other foods, have made this cut.  I’m sure most all the ingredients are fresh and certainly long-lasting as the expiration date for this can is September, 2019.

Although you can drink the stuff, you wouldn’t want to.  The smell is not the most delectable.  It’s meant for feeding tubes.  And without making light of the ingredients, it’s fortunate that there is something nutrient dense such as Jevity is available, which beats the alternatives in a pinch.  To get two cans down the feeding tube takes minimum half hour.  The drip time is not terribly fast.  My daily quota without other foods: six cans.

 

Comments

This is the first blog, with any consistency, that I’ve written.  I’ve written one other which is more a random compilation of thoughts, most just silly. But this blog is more focused. It has a purpose. It’s like a mini-digital diary for a specific process.

My friend who came to visit last week has always kept a diary.  He’s kept one going for several decades. With his intelligence, perspective and travels, I’m sure his diaries would make bestsellers, although that is far from his intent.

Over the years I’ve always wanted to start a diary.  I have in fact started several.  But the attempt never lasted more than five days.  It was always too hard to wait for the hands to catch up to the thoughts.  Or have the thoughts slow down to the pace of the pen.  But now with so many digital devices with full keyboards, the ratio of thought-to-text has improved to the tolerable level.

Regardless, when I started this mini-diary, it seemed like a good thing to do for  several reasons.  First, I was motivated to document the process, how I felt from day to day, week to week, from beginning to end.  Not that I have intentions of living in the past, but I might want to go back after this is said and done for perspective checks.

Second, I have a rather large and loving family including six very caring sibs. I wanted to be able to communicate with all of them the same.  Never any issues with ‘I told him’ and ‘not her’, etc.  Additionally, it’s a way to keep a few close friends in the loop.  From a communication management point, it’s leagues better than voice.  Everyone gets the same information and gets it at their own convenience.  Add the fact that I had not anticipated barely being able to talk and it’s a no-brainer.

Third, its been a tiny diversion for me, which may help emotionally in some way (??). Even though some days its been a (slight) chore to write something, it’s never been a larger one in comparison to say, the tongue exercises I’m supposed to be doing.  Fourth, if there is a chance it helps someone in the future then that alone is worth it (aren’t I a nice guy).

But one of the unexpected surprises writing this blog has been receiving comments.  I just never thought of them when I started.  And, the comments are much appreciated.  Given that maintaining the daily posts for now has been enough of a challenge, I’m sure the comment posters understand that even though most comment have not elicited a response, the comment is much appreciated nonetheless.

At times, I also found the comments almost steering how I wrote.  For example, I may have wanted to tone down descriptions of pain so as not to elicit return comments of pity. But this is a diary and my intention later is to understand what it felt like now.  Yes, I’d forget how week five felt compared to week four or six (not that it may ever matter).

The long, longer and longest of the short of it is that I’ve been very grateful to hear from every comment poster, without exception. And I’ve enjoyed each and every comment, without exception.

Today’s comment, on a post titled comments:  it never hurts to throw a little love out there in a comment, to most of whom you come across, physically and digitally.

w5/d5

For some reason, the tongue is still the biggest issue.  It’s now not just the sides, but the entire tongue.  The open sores on the sides are still there, but the issue is the entire tongue.  At times, it just feels like it’s on fire.  Ice cubes don’t help.  At other times, it feels like it’s locked inside a gripping pair of pliers. Either way, it’s a track stopper.

My weight is not something I can post.  It’s just too embarrassing.  More like sick.  Let’s put it this way: under 140.  Physically though, I don’t feel bad.

It’s all about the mouth.  There are times when the pain from the tongue grabs the entire left side of the jaw, including the teeth on both the upper and lower as well as the ear.  And it’s all inside, buried deep.   The nerve endings (or maybe beginnings) are having a pain party whether I like it or not.

So I’m doing whatever any red blooded human would do, I’m increasing the pain med level.  Which means that I’ve got to increase movement assistance meds.

This week I made my own batch of miracle mouth wash.  Talked a pharmacist into giving me the mix ratio and had the key ingredient already, lidocane. Just had to mix in equal parts benodryl and an antacid and–vuala.  Now armed with a new batch of miracle mouth wash, I can be seen walking anywhere close to my apartment with my mouth closed, and full of MM.

And yes, it does feel like something has been accomplished that five full weeks are behind me.  What lies in front is still a bit of an unknown.  With a heavy portion of resolve and a bucket or two of luck, hopefully it won’t be too drastic.