The Case of the Recurring Fever

Ernie felt fairly good this weekend with the exception of a high (104 degree) fever that occurred at around 6 PM each night.  The fever was scary enough but it was accompanied by confusion and slurred speech.  In hindsight, it seems likely that the "overdose" was not an overdose at all but one of these fever/delusion episodes.  Each night the fever peaked at about 104 and then dropped to 102 around bedtime.  By morning his temp would be normal.

Last night Ernie was particularly bad and I called the emergency hotline (again).  The on-call doc said that either the oxycontin or the infection in his mouth could be the cause.  Since his temp did not stay at 104 for long, I was to check with the Oncologist this AM, which I did.

The Medical Oncologist still suspects aspiration pneumonia and is afraid that the chest x-rays are not picking up the problems.  So she persuaded the insurance company to approve a chest CT for tomorrow morning.  We also had to temporarily discontinue the Oxycontin so they can determine if Ernie still has his 6 PM symptoms (he did).  He will definitely get his radiation tomorrow but the nurse that called did not say anything about the chemo.  Fingers crossed that his chest is clear and he can finish his last two chemos as well as the radiation treatments on schedule.

A Tough PIll to Swallow

The challenge du jour yesterday was pills.  Ernie's throat is so swollen that he can no longer choke down some of his large pills.  The oncology nurse told us that there are generally three options:  see if the pills are available in liquid form, or see if they can be crushed or dissolved.  With the help of drugs.com and the CVS pharmacy, we found solutions for the two most troublesome pills.  He has so many that it still takes him as long to take his pills as it does for me to eat a complete meal.

Thank goodness Jim and Charley arrived Thursday PM for their monthly visit.  Other going to Johns Hopkins, the activities of daily living are consuming most of our waking hours.  We would probably go stir crazy without some social interaction.

Oops, We Did It Again

Another day, another trip to the ER, this time for a drug overdose.  Somehow Ernie and I got our wires crossed and he ended up taking a lot more Oxycontin than he should have.  My first clue that something was wrong was when he woke up from his nap in a sort of drunken stupor.  After conferring with the Johns Hopkins hot line, we decided to go to the ER and get the antidote.  However, once we got there they were not impressed with his condition, having seen much worse and advised against giving the antidote.  They felt it would do more harm than good.. However, based on Ernie's noisy breathing, they insisted on repeating the tests for pneumonia.  Once again, all of the tests were negative--thank goodness.  We got home at midnight after only 4 hours--a new land speed record.  I am now officially in charge of administering all meds. 

This AM, Ernie finished his 20th treatment and got his weekly evaluation from the Radiology Oncologist.  The doctor continued to reinforce how well Ernie is responding to treatment but, like our nurses, is concerned about aspiration pneumonia.  From now on, Ernie has to sleep sitting up and I have to take his temperature twice a day at the same time and report any spikes to the doctor immediately. Keep your fingers crossed for us--we are so close to a successful finish.

Soldiering On

The antibiotics are kicking in and Ernie's temp is hovering at about 101.  He is on both Oxycontin and oxycodene now for pain and seems to be feeling fairly good except when he eats.  No amount of pain killers can mask the pain in his throat and mouth.  He is still trying to take as much food and drink by mouth as he can.  Eating is almost a full time job as he often has to rest for a while and let the mouth pain subside before he can finish even something as small as a cup of pudding.  He is one tough and determined guy.  We are starting to see the light at the end of the tunnel. 

67%

Ernie now has 18 treatments out of the way and only 9 more to go!  It is great to be in the single digits.  We did have a bit of a scare this AM (just in time for Halloween) but, luckily, it was nothing that will interfere with his remaining radiation.

Ernie was breathing hard and was shaking during the night so I took his temp when he got up:  102.2!  It dropped to 101.2 before we caught the bus so we decided to do the radiation treatment and then have a nurse check his temp.  I was hoping that my $5.99 CVS thermometer was on the fritz. This time his temperature was 102.9. 

Everyone went into "hope for the best but plan for the worst' mode.  They immediately started IV fluids and scheduled a chest x-ray to determine if he had pneumonia.  In the meantime, we went for the previously scheduled swallowing study, which confirmed that he is, indeed, aspirating when he drinks water.  Since aspiration can cause pneumonia, this made the chest x-ray even more important. 

Thankfully, there was no sign of pneumonia.  Even better, the swallowing doctor cleared him to take liquids by mouth again, provided he swallows in a specific way that she taught him to prevent aspiration.

Ruling out pneumonia left the mouth sores as the likely cause of infection.  Of course, there is a pill for that too.  Ernie's meds are now so complicated that he has me check behind him after he fills the box.  However, this part won't last long.   Perhaps we will have a pill box smashing party at some point to celebrate his freedom from the meds.

The no liquid diet

We thought Ernie was going to be on a liquid diet.  But, today Ernie's nurses decided he should not take any liquids by mouth until he has his swallowing evaluation tomorrow.  He can still take his pills with pudding but can consume nothing thinner.

Thank goodness we had started using the feeding tube.  We are up to 3 cans per day--it takes 7 cans to provide all of his daily calories.  We have to "titrate up" by one can per day, which means that he will be short of calories for a few days.  We are allowed to put Gatorade in the tube to hydrate Ernie and give him some extra nutrition and calories.  We are hoping the nurses are erring on the side of caution and that Ernie will be cleared to return to his Ensure and Instant Breakfast.  He has done such a good job of maintaining his weight so I hate to see him lose ground now. 

One step forward and one step back

Nurse Skaar gave Rose a clean bill of health this morning and released her from quarantine.  Ernie is still under observation. 

After radiation, we stopped to see the radiation oncologist's nurse.  Ernie has been choking after he drinks water, and the literature says we are to contact the doctor or nurse when this happens.  The verdict: We see the swallowing specialist on Wednesday and she will check to see if he is aspirating (putting the liquid in his lungs instead of his stomach).  This is a concern as it can lead to pneumonia. 

We also asked about the swelling in his throat.  This morning he had to resort to pudding to get his pills down.  We are to talk to the doctor about his on Thursday.  Some pills can be dissolved or come in liquid form but not all. 

Ernie tends to feel better in the afternoon, so we are trying to get out and walk then.  Studies show that cancer patients that walk during treatment recover faster.  This plus the lovely sunny days have helped motivate us to get out.  Let's hope that this weather lasts a few more weeks.

News from Nurse Skaar's Infirmary

I currently have two patients in my care now: Ernie and Rose.  Rose had to go back to the vet on Friday as she had blood in her urine.  After many (expensive) tests, they found bacteria and crystals in her bladder.  She is now on antibiotics for the infection, meds for the pain and a special urinary tract diet to make sure this goes away and does not come back.  Unfortunately, we've had to quarantine her as she can't be far from the litter box when nature calls, which was about every 5 minutes.  We let her out for a bit today so she could lay in her sun puddle.  Hopefully she will be back to normal before our company arrives on Thursday.

Ernie continues to develop new and painful side effects.  His voice is now incredibly hoarse and it is difficult for him to talk above a whisper.  Like the other side effects, his voice may remain hoarse for up to two months after the last treatment.  His throat is also more swollen, presenting a real challenge when it comes to taking pills let alone swallowing food.  We gave up on real food after dinner last night.  We are now down to pudding, yogurt, instant breakfast and Ensure.  This means that we must use the feeding tube to deliver the calories and nutrients he can't take by mouth.  After a few fits and starts this morning, we were successful in using the tube on our own.  Tomorrow we add a second feeding and then on Tuesday, he can use the tube as many feedings as needed. 

So far he doesn't appear to have lost weight.  The docs stress that patients that maintain their weight are less fatigued and recover faster--a good incentive to keep up with the calories.

Marking Time

After approximately 139 days, 96 loads of laundry, 75 dishwasher runs, and 40 trips to the hospital, we are literally counting the days until we return home (21!).  We are getting help with the move from the Logan-Stuarts and the Gehrs.  Both couples volunteered to come and haul a car load of our stuff back to Winston-Salem.  I don't feel competent to handle a trailer and Ernie is not allowed to drive given all of the Oxycontin he has in his system.

The Logan-Stuarts will come Thursday, and spend the weekend--a 13 hour round trip drive.  The Gehrs are batting clean-up, coming the night before our move and caravaning with us back to Winston-Salem.  This will be a 20 hour round trip drive for them. 

We continue to be astounded and grateful for all of the support we've received from friends and relatives in California, New York, Minnesota, Michigan, Texas, Georgia, Indiana, Ohio, North Carolina, Canada and London.  We would not be to this point without all of the calls, texts, emails, cards, care packages and visits.  "Thank you" does not seem sufficient for all that you've done. 

52%

Today Ernie crossed the halfway mark with his radiation treatments!  The Radiation Oncologist scoped him after the radiation and saw absolutely no sign of cancer.  However, he reminded us that we need to finish the treatments anyway...it is our insurance policy to prevent any recurrence. 

The stress of the move finally got to Rose, who ended up at the vet with an inflammation of her  bladder.  She is supposed to be on a special urinary tract food but her parents have been giving her too many treats to assuage their guilt at moving her. Starting now, she is on a strict food regime again.  Hopefully this will get us through the next few weeks until we can get her back home. 

We have been quizzing the various doctors on how soon after treatment we can leave Baltimore.  It seems no one can think of any reason we have to stay beyond the last treatment.  So, right now we are planning November 12 (a Saturday) as our move date.  YIPPEE

Counting Calories

I have often counted calories in my life but always to limit them.  Perversely, we are now counting calories to make sure Ernie gets enough. 

Taking the Oxycontin every 4 hours has helped the pain tremendously but eating is still a challenge.  Most things hurt Ernie's mouth and, in another perverse twist, the only thing he can taste is yogurt.  (He actually hates yogurt but it is supposed to help discourage the thrush.)  His mainstays now are instant breakfast, scrambled eggs, mashed potatoes and gravy, pudding, and Ruth Bonfiglio's famous mac and cheese (thanks Ruth!).  We actually went out for breakfast this morning, a day brightener for both of us.  Ernie had 2 plain scrambled eggs and a few bites of syrup with pancakes mixed in.  I ate his bacon, a ham and cheese omelet, hash browns and some of his pancakes. I seem to have this urge to eat for both of us.  Hope we don't end up looking like Jack Sprat and his wife!

Thrush but not the bird

Today we learned that one of the side effects of radiation is oral thrush--"painful white lesions" that appeared on Ernie's tongue.  Just what he needed.  Of course, there is a pill for that.  Luckily Ernie has the super deluxe pill case with 4 different times slots for each of the 7 days of the week.  I have lost track of  his meds by now so both of us carry a list with us at all times.  Keeping it up to date is the difficult part.

We also tried out the feeding tube under the watchful eye of the dietitian.  A home health care company will deliver a 30 day supply of "osmolite" plus our very own pole hanger to hang the bags of "food".  Eating solid food is fast becoming too painful.  We are supposed to gradually introduce the osmolite as needed to make up the calories Ernie can't take by mouth.  As long as he can keep swallowing liquids, his swallowing muscles will not deteriorate. 
 
To add to the pill count, Ernie was instructed to take his Oxycontin every 4 hours for the pain.  He has been resisting this for fear of becoming addicted but the folks at JH assured him that they would not let that happen.  I am very happy as I hate seeing him suffer.  He reminded me today that at our first meeting at Johns Hopkins, we were told "there will be pain, but in 6 months you will forget that you even had cancer."  We are counting on it.    

Routine

We are falling into our new routine.  Each day, Monday through Friday, we leave the house at 7:10 AM to catch the bus to Johns Hopkins.  On Monday, Ernie has his blood drawn in addition to the radiation so we are home by 10AM.  On Tuesday, radiation treatments are supplemented by chemo.  This is our longest day, arriving home by 2:30.  Wednesday and Friday are radiation only so we get back to the apartment between 8:30 and 9:00 depending on if the radiation machine is running on time and how lucky we are in catching the bus.  Each Thursday after radiation, Ernie sees the Radiation Oncologist so we get back between 10 and 11.  On the weekends, we catch up on our sleep. 

It is harder to pretend we are on vacation now.  In addition to spending more time at the hospital, Ernie has all of his swallowing and jaw exercises to do, plus a twice daily skin care regime for the radiated area and all of the teeth cleaning to do the job that saliva used to do.  Eating also takes longer as he must take small bites and chew his food well. 

Despite all of this, he never complains.  His courage and fortitude are unbelievable.  If the shoe were on the other foot, he would be very sick of my whining by now.

Chugging Along

Ernie's pain is increasing daily.  Today, eating oatmeal literally brought tears to his eyes.  He told me he now understands the reason for the feeding tube and wants to learn more about using it next week.  We thought we might have another 4 or 5 days before we reached this point...

Despite his fatigue and pain, Ernie insisted we take our daily excursion.  We visited the B&O Railroad Museum (fascinating) and bought a combo ticket so that we could ride the train about 2 miles to tour the Mt Clare House. 

Ernie rides the train

B&O Railroad Roundhouse

Mt Clare Museum House

The original property for the house was purchased by Charles Carroll, an Irish immigrant.  His son, a barrister and one of the authors of the Charters of Rights for Maryland, built Mt Clare in 1756, naming it after his sister and his grandmother.  About 3/4 of the contents of the house are original.  It was well worth a visit.

I think our excursions are a great distraction but my challenge is obviously to get him enough to eat so that he maintains the strength to enjoy them as well as to conquer the treatments.

Rip Van Winkle Returns

As we were warned, the radiation is catching up with Ernie.  He will suddenly become overwhelmed by fatigue and have to take a nap.  His saliva is also falling him.  He can no longer eat bread, crackers, cookies, etc.  Even oatmeal was a struggle this AM.  The dietitian provided recipes for high protein shakes and smoothies. I have a feeling the blender will shortly be our best friend. 

Unfortunately, "fruitastic" fluoride did not live up to its name.  It burned Ernie's mouth just like the spearmint.  Even the Novocaine rinse didn't give him any relief.  We left a message for the dentist; hope he has some other flavors in his arsenal. 

33%

As of today, Ernie is one-third done with his radiation!  The Radiation Oncologist thought everything looked on track.  For the most part, the radiation damage is isolated to the cancerous areas.  The exception is the radiation in Ernie's mouth, which is reflecting off of his crowns and burning his tongue.  So tomorrow, in addition to the mask and the mouth guard, Ernie has to pack his mouth with "dental rolls" to prevent more tongue sores.  The nurse also prescribed a Novocaine rinse for Ernie to use prior to eating.  It is getting very painful for him to eat due to his mouth sores.  Since he can't taste anything now, this seems like a good solution.

Our guests--Dennis and Lesley--have provided a welcome change from the daily hospital visits.  Because it has been rainy, we've mostly done indoor activities including a private tour of the print collection at the Baltimore Museum of Art, a trip to the American Visionary Museum where the work of self-taught artists is displayed, lunch at Attman's Deli on Corn Beef Row (YUM) and duckpin bowling at Mustang Alleys.

Dennis prepares to roll

Tonight we will learn to make Struffoli at our Italian cooking class.  We are all pleasantly exhausted from all of the fun we've had.

Speared by Mint

Another day, another medical  issue.  It seems that the fluoride gel that Ernie must use on his teeth daily and leave in his mouth for 30 minutes is flavored with mint.  Mint and mouth sores, it turns out, are not a good combination.  The mint causes quite a strong burning sensation.  The fluoride is by prescription only so while Ernie was getting his weekly chemo, I trekked to the pharmacy to explore other options.  The only choice to the spearmint is "fruitastic." I certainly hope it is.  The pharmacist had to order it so we will find out tomorrow. 

Overachiever

Today Ernie finished day 6 of his radiation.  We were told that he probably would not suffer any effects until treatment 11, but could start to be symptomatic by the 7th treatment.  Being the overachiever that he is, Ernie is already getting the dreaded mouth sores.  This means spicy foods, acidic foods and citrus flavors are off the list of menu options.  The intersection of foods that he can taste and foods that he can tolerate is getting pretty small. 

Tomorrow the Gehr's return for another visit.  We are going to try one of the deli's on "Corn Beef Row."  Perhaps we can find something there to tempt Ernie. 

Festivities

Both Ernie and I watched the clock this morning.  At 11 AM--48 hours after his surgery--he could shower and we could clean the wound and flush the feeding tube.  Neither of us aspire to the medical profession.  But, when we looked around the apartment, there was no one else to attend to this so we took the plunge.  It was not as bad as we thought.

With that out of the way, we decided to split our time between "Trawler Fest" and an Antique Festival.  This meant foregoing the Columbus Day Parade, but something had to give. 

Ernies' Favorite Trawler (52 feet!)

It was a gorgeous Indian Summer Day--82 degrees and not a cloud in the sky.  Just the kind of day we needed to recharge our batteries for the coming week.

Need to Know Only

Today we are reminded that sometimes information is given on a need to know basis only.  This tends to happens when the outcomes are not particularly pleasant. 

Yesterday after the feeding tube surgery, the nurse inquired if we had pain killers at home.  This should have been our first clue that this surgery was not quite the walk in the park that had been implied by the omission of certain gory details.  As soon as Ernie could take liquids by mouth, the Oxycontin was pressed into action.  It dulls the pain enough to make it tolerable. 

The tube itself is very small but there is some kind of a disc that it fits into that we weren't aware of.  It is about two inches in diameter, requiring a quite a good size hole in his abdomen.  No wonder it hurts! 

We are always surprised when we are blindsided by things like this.  Generally, we ask tons of questions.  We decided that sometimes our defense mechanisms kick in and we subconsciously fail to probe so we don't have to face the bad things right away.  I think the good people at Johns Hopkins have learned not to tell you more than you want to know. 

Tomorrow we non-medical types get to change the dressing and give the tube a test run.    Wish us luck. 

Tales of the Macabre

It seemed somehow poetic that the doctors would choose the anniversary of Edgar Allen Poe's death in Baltimore as the day to put in Ernie's feeding tube.

As those of you who have visited us know, Poe died mysteriously after drinking at a tavern called The Horse You Came In On Saloon on October 7, 1849.  The date is widely celebrated in Baltimore.  Today, outside the Saloon, black cars, statues and waste cans emblazoned with Poe tributes appeared. 

Poe made a name for himself writing about the macabre.  Feeding tubes are also a bit...well, you get the picture. 

Before the feeding tube surgery, we were warned that the placement of Ernie's organs might make it impossible to place the feeding tube the normal way.  This happens in about 10% of people.  (I always knew he was special).  However, they decided to give it a try and were able to find space to inflate the balloon that holds the tube in place.  After that, we had a macabre meeting with a nurse who taught us how to dress the wound and clean the tube.  This is definitely not my forte, but I will do my best.  Cleaning a feeding tube is nothing compared to what Ernie is going through.

Parched

Another radiation under our belt--only 23 to go!  We are starting to recognize other patients now that we have the same time slot every day.  The lady that has the time after Ernie got to "ring the bell" today--a ritual that is performed after your last treatment.  As you can see, we are counting the days until Ernie can ring the bell.

On our way out of the clinic, we ran into Ernie's Radiation Oncologist, which was fortunate as Ernie's salivary glands are giving up the ghost. We knew this was going to happen but didn't think it would happen so fast.  Without saliva, "everything tastes like cardboard" according to Ernie.  The doctor gave him a prescription for a drug that is supposed to increase saliva production.  In addition to cooking highly flavored foods, we are also adding sauces and gravies to our repertoire.   The only silver lining is that Ernie no longer has to force himself to drink 70 ounces of water each day--now it appeals to him.

Moving Right Along

We left the apartment at 7:15 this morning for radiation and were back by 9:30.  They were running late today--we forgot to check the machine's website or we would have known that--so hopefully we can shave some time off future visits, at least on Monday, Wednesday and Friday.

Our next challenge is becoming food.  Ernie's taste buds were already desensitized by the chemo but the radiation is now taking its toll as well.  Almost nothing has any flavor anymore.  We did an experiment at breakfast this morning to see what he could taste and found three things:  blueberry almond oatmeal with flax (thank you Kathy Fackelman!), rye bread (thank you Dennis Gehr) and onions, which I put in his eggs.  The common thread seems to be strong flavors.  We are making a foray to the big supermarket this afternoon to stock up on Ensure and Instant Breakfast, which we are told will become staples in Ernie's diet, and to look for more foods that might provide some flavor to his food.

Going the Distance

We had hoped that our daily trips to the hospital for radiation would be offset by shorter chemo sessions.  So far, it seems we were mistaken.

 We arrived at the hospital at 7:30 AM today and got home at 5:30 PM.  In between...

1.  We learned the correct techniques for the swallowing and jaw exercises.   Ernie must do these 3X to 5X per day.  The speech pathologist compared the pre-radiation jaw muscles to raw meat (soft & pliable) and the post-radiation muscles to cooked meat (tough and rubbery).  Right now he can open his mouth fully, but if he doesn't do the exercises, his jaw could be cooked closed and the process can not be reversed.  Not a very appetizing analogy, but quite effective.  He did the exercises as soon as we got home.

2.  Ernie had his 2nd of 27 radiation treatments.  Only 25 to go!

3.  We met with the Radiologist Oncologist.  He scoped Ernie--which he will do once per week.  (Ernie was thrilled to learn this.)  Although he found nothing concerning yet, he prescribed some nerve blocking pain killers that he wants Ernie to start taking to block the pain before it starts.  The pain comes from mouth sores and burned skin in the throat.  He and his nurse both said that these usually start to manifest themselves around the 11 treatment mark. 

4. Ernie had his weekly chemo treatment.  As usual, we had to wait 3 hours for a spot to open up.  The nurses said they will try to get him in faster in the coming weeks.  Unfortunately, the nurses forgot and gave him the full dose of Benadryl (he prefers a half dose) so he is struggling to stay awake right now. 

Normally we will see the Radiologist Oncologist on Thursday so we hope that next Tuesday will be a shorter day.  Right now we are psyching ourselves up for our 8 AM radiation treatment tomorrow.

One down and 26 to go

Today was a nervous day.  The chemo room is a rather somber place, but it seems positively cheery compared to the radiation waiting room.  People in radiation "look bad" according to Ernie.  We know this is going to be the most taxing part of the treatment but seeing the other patients was a grim reminder.

Of course, Ernie came out of the treatment room as strong and lively as when he went in.  This was no small feat.  For this session, he had  to be strapped to the table for 30 minutes--about twice as long as he will be in the future--as they had to line up the radiation and then produce films for the doctor to check.  Once the doctor was happy with that the beams were going to hit the right spots, they went "live" and gave him his first treatment.  The mask is so tight that he still had the marks on his face an hour later.  If you are interested in what the mask and procedure look like, follow this link and watch this 2 minute video. 

 http://www.youtube.com/watch?v=W_ClcBF6a0I&feature=related

Ernie was rewarded for his bravery with the EXACT time he was hoping for!  His daily radiation will be at 8 AM--not too early but early nought that he still has most of the day free.  On Tuesday's, he will  have chemo in addition to radiation and on Thursday he sees the radiology oncologist so those days will be a bit longer. 

However, they have given him plenty to do with his "free" time.  He has to brush and floss his teeth four times per day.  Two of these brushings will be followed by a 10 minute fluoride treatment.  He also has to gargle 4 to 6 times per day,  do jaw and swallowing exercises three times per day, and wash and moisturize his neck and face twice per day.  Whew!  Hopefully all of this activity will make the time fly by.

Waiting to Exhale

We had a great weekend with the Saunders and Suttons--friends from Winston-Salem.  We toured the the  Barque Eagle--a Coast Guard cutter and one of America's Tall Ships (see photo below).  We also visited the Cone Sister's collection of Impressionist Art at the Baltimore Museum of Art.  These activities were interspersed with LOTS of eating (seafood, crab cakes and Italian food in Little Italy).  Ernie and I also feasted on Dewey's sugar cake--a Winston-Salem delicacy smuggled across the Maryland line by our friends--which we enjoyed immensely.  I think we each gained 10 pounds but had lots of fun doing it.

Cindy , Cyndi, Pam, Ernie, Rob and Jack

Tonight we are watching our adopted team--the Ravens--beat the hated Jets.  Several friends emailed that they saw our apartment building on TV when the networks were panning the Baltimore skyline. Lots of celebs are in town for the game.  Yesterday, we had lunch next to Frank Robinson! 

Tomorrow morning we are free.  Then tomorrow afternoon, the radiation treatments begin.  Ernie is naturally nervous but I know that he will persevere just as he did with the chemo.