No Rest for the Weary

My apologies to all those who have written requesting an update.  We haven't had any internet service since last Wednesday.  Hopefully, the cable company has made the appropriate repairs so we can stay connected.

Today is the third week anniversary of Ernie's last treatment.  We've decided that radiation is the gift that keeps on giving. 

After Ernie's neck turned from sunburned to a deep beet red and the blisters multiplied, I emailed the oncologist for advice.  It is so refreshing to have the doctors share their email addresses and sometime even their personal cell phone numbers.  The oncologist told us how to protect the blisters from infection but cautioned it could be another week or two before we saw any improvement in Ernie's overall condition.  That was last Wednesday and, so far, no improvement to speak of. 

We've returned to liquid meds as pills are too painful to swallow and/or get stuck in Ernie's throat.  Today, I am picking up a patch that will continuously dispense pain meds through his skin.  This is the only option to the continuous release pain pills.

Our follow up appointment at Johns Hopkins is December 20 and they promised he would "be a new man" by then.  So far, they have been right about everything so we have hanging on to this thought. 

Pain Management

It is hard to believe that two weeks ago today Ernie rang the bell signifying the end of his radiation treatments.  Since then the skin on his neck has turned from Hawaiian tan, to sunburn and now to a blistered mess.  His throat has also gotten increasingly sore.  No wonder, if the outside is worse I guess it stands to reason that the inside is worse as well.

Since narcotic painkiller prescriptions must be written in-state, today we visited Ernie's primary care doctor to get refills.  Between the doctor's office, the pharmacy and a stop at the supermarket to get more pudding, we were only gone for a few hours.  Still, Ernie was exhausted by the effort. 

Looking back at the discharge notes from the doctor, he cautioned that we may not see any improvement for at least two weeks.  Unfortunately, it looks like he was right.  Ernie is such an over achiever, I guess we set our sights too high in terms of conquering the pain.  Despite the pain, however, Ernie has been doing a stellar job of maintaining his weight and consuming his three puddings per day.  And, we still wake up every morning optimistic about his recovery. 

Home Sweet Home

Home at last.  

We left Baltimore at 10:30 AM and arrived in Winston-Salem at 5:30 PM.  We went the scenic route through Harper's Ferry and the Appalachian Mountains--a little longer than the DC route but much less traffic. It was a beautiful day and thanks to the power of Feliway (feline facial pheromones--thank you Sue Stevens) there was nary a peep from the cats in the back seat.  This is truly a miracle as they hate the car and usually remind us of this constantly whenever we take them with us.

On this trip, both cats AND Ernie dozed most of the trip.  Ernie's symptoms continue to develop--his neck turned from tan to red (one week after the end of radiation) to blistered (yesterday).  His throat has become progressively sorer as well.  Given the looks of his neck, one can just imagine what is going on inside his throat. 

It seems like we have been gone forever--I guess 4 1/2 months is a long time.  Since we just finished remodeling before we left, it was hard to remember what the house even looked like.

It turned out to be a very emotional home coming.  When we walked in the door, we were greeted by this,signed by many of our great friends....

I must admit, I cried.  It has been such a long journey but, as the old saying goes, "many hands make light work."  Our friends lifted our spirits when things seemed bleak.  It is great to be back among y'all.  We look forward to reconnecting in the next few weeks as Ernie regains his strength and his voice.

Homeward Bound

After getting some rest, Ernie decided that we should head home to Winston-Salem on Saturday.  The big question now is will the remaining "stuff" fit in our car? 

I am of the opinion that it will fit while Ernie is more skeptical.  Tomorrow we will ask the concierge about storing a few things in the event that Ernie is right.  Our next trip to Baltimore is December 20 so it would only be for a month or so.  This will give us some flexibility if, at the last minute we have a fit problem.    In the meantime, Ernie's job is to rest and feel better. 

Check Ups

Both Ernie and I had check-ups today.  When Ernie was first diagnosed with cancer, we volunteered to take part in a study called HOTSPOT (HPV Oral Transmission Study in Partners Over Time).  We both provided DNA and filled out questionnaires.  Today I got a free head and neck exam to check for base of throat cancer.  This time I was on the receiving end of the endoscope.  My exam was clear and the doctor advised me on what to watch for.  Right now, there is no good data on how many partners of those with HPV cancer will develop cancer themselves.  The purpose of the study is to determine this.  Note to all of you parents of teens or younger, please consider having both your boys and girls vaccinated for HPV. You would not want your worst enemy to go through this treatment or treatment for cervical cancer.

After my appointment, Ernie saw his medical oncologist.  This last week was very rough on him.  His pain level was much higher than during his treatments, his mouth sores seemed to get worse, his voice got more hoarse (he can't speak above a whisper) and his skin actually got redder and more sunburned looking even though he was not exposed to any more radiation.  We were not able to get the suggested amount of food down him without making him sick and most days he did not feel well enough to go out.  The doctor confirmed that all of these things are normal.  In fact, she said his symptoms may get worse for another week.  However, she promised that in three weeks, he will be a new man.  We can hardly wait!

The doctor is fine with us returning to Winston-Salem but told Ernie to avoid crowds and sick people for another couple of weeks until his white cell count improves.  We promised to tell the rental agent tomorrow if we are going to extend beyond Saturday.  Ernie was too tired from our long day to make any decisions tonight.

Let the Healing Begin

Now that we have had a day of rest, we wanted to pause and again thank everyone in our incredible support system.  Your emails, texts, calls and gifts of congratulations have lifted our spirits more than you will ever know. 

Although the bell tolled, it dawned on us that the battle is just half over.  Now we have to nurse Ernie back to health.  As predicted, he had his worst days to-date yesterday and today.  His throat and mouth are extremely sore, his voice is more hoarse and he generally feels like s*!t.  Even though the treatments stopped, the effects do not stop immediately. 

By popular demand, I will continue to post weekly (or so) updates on his progress.  For this week we, with the advice of our crack medical team, have set ourselves some very basic goals:

1.  Maintain Ernie's weight at 155 pounds.  The feeding tube can not come out if he loses weight.
2.  Eat at least 300 calories of solid food by mouth per day.  This is the equivalent of 3-3.25 ounce snack cups of pudding.  This is critical to maintaining his ability to swallow over the long-term.
3.  Exercise daily to build up his strength.  This means walking 2 miles or strength training with rubber bands.  In addition, he must keep up his swallowing exercises. 
4.  Maintain a regular schedule of 3 "meals" per day so that Ernie will learn to be hungry again.

When we had our two week break between the end of the intensive chemo and the start of radiation, Ernie bounced back quickly.  We are hoping that,once again, two weeks will lead to marked improvement in his symptoms so that the move home will not be too exhausting for him. 

Ernie Rings The Bell!

The day we have been waiting for finally arrived.  Ernie marked the occasion of his final radiation treatment by ringing the bell outside of the treatment room (video clip below) as the nurses and other patients looked on.  It is a great tradition, providing closure for Ernie and encouragement for those still undergoing treatment. 

They also presented him with his radiation mask--a kind of trophy for his bravery.

After ringing the bell, we met with the Radiation Oncologist who gave us a schedule for tapering off all the medications and a briefing on when to expect the side effects of treatment to subside.  Long story short, it can be 6 months to a year for complete recovery of saliva and taste buds but major improvement can happen before then.  Ernie will see him again for a follow up in 6 weeks. 

Finally, Ernie had his last chemotherapy.  We thought he wouldn't have to be stuck again for a while, but the Oncology Nurse wants to check his blood again next week and give him more magnesium if needed. 

We returned to the apartment to celebrate.  We could not be more happy. 

26 Down and 1 to Go

Ernie had his 26th radiation treatment today and his last blood draw for at least five weeks.

Tomorrow is the BIG day...
1.  Last radiation treatment and ringing of the bell
2.  Last time he has the scope put down his nose
3.  Last chemo treatment  

We will also get our schedule of follow up appointments and instructions on how to taper off the drugs.  Can't wait.  Tonight I need to refresh my memory on how to use the video function on my camera so I can capture the moment. 

Time Off

After radiation yesterday, we came backed to the apartment and crashed.  Although Ernie is anxious to get the last two radiation treatments over and done with, we are both exhausted from the week:  long hours at the hospital, up too late trying to get Ernie's food down and sleep interrupted by coughing and the need for pain meds.  It was heavenly to sleep in this morning.  We are resting up so that Ernie can finish strong on Tuesday. 

Down But Not Out

Ernie had his weekly visit with the Radiation Oncologist today.  He scoped Ernie and showed me areas in his throat that are already starting to heal and said that many more areas like this will emerge in the next two weeks. The swelling in his throat should also start to moderate.  All of his vitals looked good (normal temperature!) except for his weight.  He put on about 5 pounds pre-radiation as we were warned that it would be difficult to eat.  He was doing a good job of maintaining that weight until this week.  He was down 4 pounds versus last week.  Oops. 

With so much time spent at the hospital, it has been hard to get all the cans of food and cups of water down him.  Food takes 4 hours and water another hour.  And, it is very uncomfortable for the patient if you give it all at once.  Imagine how you would feel if you ate all of your calories at one sitting.  So, I have to space it out.

Last night I resorted to feeding him while he slept, which is OK as he has to sleep upright.  Even then, I didn't manage to get all of the calories in him.  Needless to say, we got a strong reminder from the nurse to pay more attention to nutrition. She also encouraged Ernie to keep swallowing soft food as much as possible--the exercises will pay dividends but there is no substitute for the real thing--and to get some exercise. 

 This afternoon was beautiful so, following orders, we went for a walk.  After about a quarter mile, Ernie was tuckered out.  He told me "this radiation is kicking my butt."  We resolved to try to walk a little further everyday once he completes his treatments.  Won't be long now: 3 radiations and one chemo to go.

Change of Plans

When we saw the Medical Oncologist yesterday, she asked us to consider staying in Baltimore for an extra week in case Ernie needs help with pain management.  In her experience with the clinical trial, the first week after treatments are completed is typically the most difficult.  So today we extended our lease until November 19.  Given all of the surprises we've had in the last 7 days, it seems prudent.  We are disappointed but we will still be home for Thanksgiving and will feel more secure being close to the doctors. 

The pain is wearing Ernie out.  The mysterious fever has disappeared so we are gradually adding back the Oxycontin but not fast enough to eliminate the pain completely.  Only 4 more radiation treatments and one more chemo--the fact that we can count these on one hand propels us on.

Fever Mystery Continues

The chest CT confirmed that Ernie's lungs are clear, once again ruling out aspiration pneumonia as the cause of the fever.  The two remaining theories are a drug induced fever from drugs that effect the central nervous system (Oxycontin and others), or a sinus infection.  The Oncologist went over his medications today and eliminated 3 antibiotics.  She also reduced the dosage of another drug that can depress the central nervous system.  Finally, they are testing him for a sinus infection.  In the meantime, I am to be on alert at 6 PM to administer Tylenol if his temp hits 103. 

The oxycodone alone is not enough to control the pain.  Even a small sip of water puts Ernie at a 10 on the pain scale.  So, the doctor is adding back a low dose of Oxycontin.  If the Oxycontin turns out to be the source of the fever, he may have to be transferred to in-patient status for pain management for the last week.  I think the pain will have to hit 20 on a 10 point scale before Ernie will consent to that.