Final Plans

We have now heard from the tumor boards at Wake Forest and John’s Hopkins.  Both are recommending a 3 drug chemo cocktail very similar to the one used to treat Ernie initially.   This combo is supposedly well tolerated with less toxicity than most other combinations. 

We will start Wednesday, December 24,  at Wake Forest's new chemo center in Clemmons.  Ernie will continue to receive chemo weekly for 6 weeks then Wake Forest will repeat the scans to see if the drugs have been effective.  If not, the cocktail will be changed to something stronger for another 6 weeks, etc.  This is a standard-type protocol and is estimated to provide 10 more months of life--a definite improvement over the estimate of "weeks or months" that we were given if we do nothing.  The chemo should also eliminate Ernie's very sore throat and some of the swelling in his face and throat, which could enable him to talk and even swallow food again! 

The new potential wonder treatment is immunotherapy drugs.  These drugs are thought to add significantly to the expected life span and even to be potentially curative.  Hopkins is doing several clinical trials with these drugs.  However, because of Ernie's scleroderma, he is not eligible for these trials.  We asked if they would allow him to follow the protocol but not be in the clinical trial—a practice we observed when we were treated the first time.  The Medical Oncologist who is now in charge of Ernie's cancer care at Hopkins, said that these drugs are "contraindicated in cases of scleroderma because they rev up the immune system" so she could not recommend this approach for him.  

 

Of course, Ernie is not one to take "no" for an answer.  He has already contacted his Scleroderma Doctor for a second opinion.  She is a very practical doctor who understands that having scleroderma only matters if you are alive.  She promised to speak to the Medical Oncologist directly to see if there were any of these drugs she would feel comfortable with.  So we will continue to pray that Hopkins will eventually give Ernie the immunotherapy.  But everyone has been clear that there is no proven cure for Ernie's condition.   It is just a matter of time. 

 

So with this blog, we are signing off to devote our energies to the big fight.  Ten months is an average--our doctor has patients that are alive after 1 and 2 years--and Ernie is determined to beat the odds as well.

 

If you would like to "talk" to him, you can text him (336-407-3800) or email him at fackelmn@ix.netcom.com. 

 

Thanks again for all of your help and support.  You have given us the energy to carry on.   

 

Or Not

I'm sure by now everyone is wondering why it has been so long since the last blog post.  Truth be known, we got the results of Ernie's scans on Wednesday evening.  It has taken us this long to digest the results.

 

 Ernie’s scans show that the tumor at the base of his tongue is quite large (1 ½ to 2 inches).  Nothing showed on the scan he had in May so our local ENT doctor is assuming the cancer is now quite aggressive.  Also, the scans showed activity in both the left lymph nodes (it had been there before but surgery supposedly removed it all) and right lymph nodes—a brand new occurrence.  Finally, there were small lesions in his lungs that might be cancer—but could also be aspiration pneumonia. 

 

Because of the extent of the cancer, surgery is not an option as far as Wake Forest Baptist Medical Center is concerned.  Also, since Ernie has already had his life time allotment of radiation, that is out too.  That leaves chemo—which is palliative not curative. 

We will meet with the local oncologist on Wednesday but, if he tells us this chemo will be like the first round, we will probably decline as Ernie felt so bad during treatment.  The scans have also been sent to Johns Hopkins for their opinion.  There is still a possibility that they can identify  a clinical trial that Ernie will qualify for.    So now we wait for final recommendations and then decision time.  All that will happen hopefully by Friday.  It will be a long week. 

 

 

Plugged

We have been taking it easy, just trying to get to Wednesday and complete the scans.  Most of our time has been spent on symptom management.

A trach is essentially a second nose.  If your nose is running all the time, it is very uncomfortable.  If things get too dry, that can cause problems too.

After stretching Ernies esophagus, the ENT doctor felt Ernie had way too many secretions.  So he started Ernie on a medicine to dry him out.  This seemed like a blessing at first.  Far less "nose" blowing means far more sleep.  However, things took a turn for the worse this morning.

Not long after breakfast, Ernie felt he could not get his breath.  Since the ER is closer than Urgent Care, off we went.  Long story (4 hours) short, Ernie had dried "crud" in his airway (aka plugs).

The solution to plugs is "saline bullets."  We had recently gotten a supply but they came without instructions.  So, the nurse demonstrated.  Basically, you pour sterile salt water down the trach tube into your lungs!  Imagine jumping in the ocean and swallowing at the wrong time.  The idea is to induce coughing.  Works like a charm but not the most pleasant experience. (WHO THINKS OF THESE THINGS?)  It did make Ern feel a whole lot better after he got over it.

Now we can refocus on tomorrow.

Not Time Yet

After three doctors suggested that we speak with The Hospice and Palliative Care Center, we set an appointment for yesterday.  Ernie was in his workshop when the nurse arrived to sign us up.  Not too far into the conversation, she suggested that perhaps calling in Hospice at this point was premature. 

The focus of Hospice is symptom management--something that Ernie could use--in the comfort of your own home.  However, as with most things related to health care, the government calls the shots and the rules are complicated. 

To get Hospice care, you must sign over your treatment to them.  The Hospice doctors then determine your meds and care.  They only provide palliative care--no curative or life-saving measures. 

You can revoke your Hospice treatment at any time, but you must do so before seeking life-saving measures. This means, in the case of emergency, you have to call Hospice and revoke that treatment before you can call 911 or go to the emergency room.  If you don't intend to call 911, this is not an issue but we are definitely not there yet. 

The nurse told Ernie he did not look like her typical patient.  Generally her patients are not well enough to be in their workshops.  Also, since Ernie has his PET/CT scans next Wednesday, if we signed up we would just have to revoke for the test (since it is for curative purposes) and then sign up again after the test.  The nurse thought that the lymphedema massages would also qualify as seeking treatment, so we would have to revoke before each of his twice weekly massages as well. 

While it would be nice to have nurses and medicine come to us instead of running out every day, we are still very capable of doing these things.   So, we elected to continue without Hospice.  Ernie's Internist will have to provide symptom management for now. 

Again

It was difficult to come up with a name for this post.  Friends that have already heard the news suggested that expletives are most appropriate to describe the situation--Ernie's base of tongue cancer has returned. 

The local ENT doctor was concerned about how fast Ernie's swallowing and breathing were deteriorating.  When he first saw Ernie in early October, the doctor was not convinced that a trach was inevitable.  Two weeks later, it was critical. 

The rapid change in Ernie's condition made the doctor suspicious.  So, when he did the trans-nasal endoscopy, he did a biopsy as well.  He was very casual about it--one of these "while I'm in here I might as well go ahead and take some samples" kind of thing.  I think he did not want to alarm us.  Unfortunately, the biopsy confirmed his instincts. 

After several days of discussion with our wonderful medical teams here and in Baltimore, we've decided to pursue two paths simultaneously:

1.  Palliative Care:  this is a dedicated group within Wake Forest Baptist that focuses on symptom and stress relief.   They will make sure Ernie is not in pain, work on helping him get some good sleep, help us get appointments and supplies more quickly, etc.  This will be especially important if Ernie's symptoms continue to progress at a rapid rate. 

2.  Aggressive Treatment:  Ernie will have a PET/CT next Wednesday to determine if the cancer has spread beyond the base of tongue.  Once the doctor's know what areas they need to treat, they will come up with treatment options.  We have asked both the Multi-disciplinary Tumor Boards at Wake Forest and Johns Hopkins for recommendations.  We should have these about a week after the scans.  While the options are more limited and more drastic, the good news is that there are options.

Ernie took the cure once, now he will have to take the "re-cure." 

From Bad To Worse

Despite daily massages, Ernie woke up in the wee hours Monday to find his throat and airway (above the trach) swollen shut.  Because he has the trach, he could still breath just fine but he could not swallow his salvia. 

After more calls to the doctor, Ernie ended up in the OR at Wake Forest Baptist Medical Center again today for an esophageal dilation.  Basically, they sedate you and then stretch your esophagus open again.  Some people require this procedure every few weeks to months; for others, once does the trick.  Given all Ernie's edema, we are unsure how long this will last but Ernie is happy to have some relief. 

There seemed to be a LOT of surgeries happening today so Ernie's doc had to use the Brenner Children's Hospital Operating Room.  Ernie was in rare form.  After talking the nurse out of a whole vile of pain killers post surgery, he told her "I haven't felt this good since Woodstock."  I thought the nurse would split a gut.  As he was leaving, she rewarded Ernie with a stuffed bear named "Lucky."  We are hoping that is a good omen. 

The Mysterious Case of Lymphedema

After having the day off from doctor's appointments yesterday, today we dutifully trudged back to the medical complex to see an Occupational Therapist that is trained in the mysteries of lymphedema--the technical term for the swelling in Ernie's face and neck. 

The secondary lymphedema that is plaguing him happens when the lymphatic system does not drain properly causing fluid build up.  In this case, trauma from the tracheotomy combined with the existing fibrosis in Ernie's neck is the culprit. 

It seems that identifying the problem is the easy part.  There are no medical specialties in lymphedema.  Sometimes (rarely it appears) a doctor with take a "clinical interest" in lymphedema but these doctors seem to be few and far between.  So far, we have not been able to identify any locally. 

This leaves most people in the hands (literally) of Occupational Therapists or Massage Therapists that have been trained in Complex Decongestive Therapy (CDT).  CDT consists of three parts:  manual drainage of the lymph nodes through massage, "pumping"  and stretching exercises and compression. 

We are signed up for 2 sessions a week with the OT.  During this time, I will learn the massage techniques so that Ernie can get daily massages.  In addition, Ernie will do the exercises at home every day.  The compression garment will be added next week.  In case you were wondering how we would fill our time between doctors visits....    Another skill added to the resume!

Turkeys Are Safe Here

We spent 3 long hours at the doctors offices yesterday.  It seems fitting on the day before Thanksgiving that the focus was on swallowing.  If you are squeamish or about to sit down to Thanksgiving dinner, you may want to stop reading at this point.  I am going to describe the medical procedures to highlight (OK, brag about) how courageous my husband is. 

First, Ernie did a swallowing study which is designed to determine if the food is going down the "right pipe".  This study entails having a flexible tube with a camera on the end stuck down your nose and into your throat (no sedation allowed).  Once this is done, you are expected to swallow various items such a water and applesauce while the Swallowing Specialist watches.  To make it all the more appetizing, all the items you must swallow have been dyed a vivid blue-green.  Yum. 

As if this was not enough fun, the swallowing study was followed by a trans-nasal endoscopy.  Normally, an upper endoscopy is done by a GI doc who knocks you out so he can put a scope down your nose, into your esophagus and see all the way to your stomach.  Turns out a trans-nasal endoscopy is the same thing except that is done while you are awake! As the doctor drolly said, "not everyone can tolerate this".  The benefits are speed--you don't have to have an IV or be knocked out--and you can watch if you want.  Thankfully, they do numb the nose.  Afterward, the doctor said he knew Ernie would do well because of how well he handled being intubated while awake prior to his surgery.  In fact, he said the whole OR team had been impressed at Ernie's calm demeanor under very unpleasant circumstances. 

Anyway putting these two studies together, the doctors determined that whatever Ernie swallows right now is at least partly going down the "wrong pipe".   If you get enough food and drink in your lungs, it can lead to aspiration pneumonia.  Food is going down Ernie's windpipe because the muscles at the back of the throat that close off the windpipe when you swallow are not working well enough.  The fibrosis and swelling in his neck have made these muscles less flexible and harder to move. 

To overcome this, the doctor gave Ernie a workout regime--a set of five exercises, 20 reps each, twice a day--that targets these muscles.  The net of all this is that Ernie will not be eating turkey (or any other food) today but, with some hard work,  he could be eating in 4 to 6 weeks.  Yipee! 

Post Traumatic Stress

All day yesterday I had flashbacks of the trach tube coming out.  I was feeling more than a little gun shy about the daily ritual of changing the trach tie.  I kept racking my brain.  There must be a better way.  How do people who live alone manage this feat?!?

Then it hit me.  Wonder if I could put the new trach tie on and then remove the old one.  This would eliminate the vulnerable part of the operation where he has half of the old tie on and half of the new and nothing holding them together.

Sure enough, I tried it this morning and it worked!  There is enough room in the slots that the ties fit into to accommodate the ties for both trach ties at the same time.  As the old saying goes--necessity is the mother of invention.  I will definitely sleep better tonight. 

Butter Fingers

Our morning started with a rush of adrenaline. We were in a hurry to get up and at 'em as we hoped to score an appointment with the ENT to figure out how to get rid of Ernie's edema. 

As part of the morning routine, we must change Ernie's trach tie each time he showers.  The trach tie is literally that--it looks like the string that holds a bow tie in place.  In this case, it is the ONLY thing keeping the trach tube inside the neck.  There are no stitches, nothing. 

Before being discharged from the hospital, we were shown how to change the trach tie and warned that we should always change it together.  Ernie is to keep his hands firmly on the trach tube to hold it in place.  At the same time, I am to loosen one side of the wet trach tie and immediately attach one side of a dry trach tie.  When this is done, I move to the other side and repeat.  All this is to insure that the trach tube does not fall out.

By now, you have probably figured out where I am going with this story.  In our haste, and at the most inopportune time when one side of the trach tie was off, Ernie coughed.  Yes, the entire trach tube came out in Ernie's hand, leaving quite a hole in its place.

We both looked at each other.  I thought about running downstairs to find the emergency directions on how to reinsert the thing and also about calling 911.  Instead, we decided that Ernie should use the technique for inserting the inner lining (technically called the inner cannula) and put it back in.  Of course, he did just that.  Guess all this impromptu medical training we've gotten paid off. 

We did get our doctor's appointment, but not until Wednesday.  We have vowed to be careful between now and then. 

It is always something....

Things were progressing well until the morning after we saw the doctor (of course--it would be the morning AFTER).  On Tuesday, Ernie woke up with "chubby cheeks".  This is a sign that his lymphatic system is not working as well as it should be.  By evening, he was looking his normal, handsome self so we forgot about it. 

Wednesday morning was a repeat of Tuesday.  Each day was a little worse than the day before, and at night he was beginning to retain his cherubic appearance.  From Ernie's previous surgery, we feel we know what is needed--lymphedema massage--but need to get a referral from the doctor.  Hopefully that will come on Monday (we have called and emailed) as this is not only an appearance issue but is affecting his voice and lead to infection long term.   In the meantime, he is doing "pumping exercises" to try to get his system righted.  It is always something.... 

Weighing In

Part of our normal morning routine is the "weigh in."   Over the last year, Ernie lost about 10 pounds for a total weight loss of 40 pounds versus his pre-cancer weight.  When he dropped into the "featherweight" category, we along with the doctors, decided it was time for the feeding tube.  While he was waiting for the surgery and then recuperating, he dropped two more weight classes.  I joked that I was going to fight him under the name "El Flaco"  (translation  "The Thin Man").

Today the scale rewarded us with good news--he is starting to put back on some of that weight.  This will also help him regain strength and stamina.  As of today, he is officially "junior featherweight".  I always knew he was a fighter! 

The Inquisition

Today was Ernie's follow-up appointment with the surgeon/otolaryngologist.  His secretary purposely scheduled Ernie at the end of the day after Ernie told her he had "a LOT of questions" for the doctor.  "A lot" turned out to be a page and a half.   

The doctor was very patient.  I did not even have threaten to throw my body in front of the door to keep him in the exam room.  He and Ernie had a lively, give-and-take discussion.  For example...

     Ernie:  "Why do I feel crappy when I get up in the morning?"
     Doctor:  "Because you just had major surgery less than 2 weeks ago.  Plus, how much weight did     you lose?  Give yourself some time to heal."  

     Ernie:  "Purple?  Really?"
     Doctor:  "You're right.  We'll order you something else.  What color would you like?"

The long and short of the discussion was that Ernie can resume his normal activities as long as he feels able.  His voice and body will both be stronger in the morning, when he is rested, and wear out as the day progresses.  We can expect this to improve over time. 

The doctor expects the trach to be permanent but is hopeful that Ernie will be able to eat again in the long run.  He is allowed to try some Ensure or Boost or even a milk shake when he is up to it.  Our next visit will be in a week or two when Ernie's new (clear or white--not purple) trach is available for installation.   I'm sure there will be A LOT more questions. 

The Swedish Nose and Other New Things

The last few days have been filled with new things.  We had another nurse visit, a visit from a Physical Therapist, one emergency call to the ENT doctor, one routine call to the ENT clinic and one call to the manufacturer of the "Swedish Nose."  Here is what we learned.

Although we had prior experience with a feeding tube, we did not have the mic-key button before.  The benefit of the mic-key button is that you can eat "meals" instead of having a machine that slowing gives the food over time.  Well, it seems we have been a little exuberant at meal time, giving the food too fast.  The nurse advised us to allow 20 minutes per meal. 

Most of our excitement involves the trach--new territory for us.  Evidently, when you have a trach, especially at first, humidity is your friend.  At night, Ernie has a special humidifier that attaches to the trach to deliver warm, moist air directly to the tube.  However, this machine is not exactly portable.  Thus, what to do during the day especially when the heat is on, making the air even dryer?  We tried a room humidifier but it is not nearly as effective as the night humidifier.  Enter the "Swedish nose", also known as an "artificial nose."  (Don't ask about the origin of the name--guess the Swedes must have invented it.) 

The Swedish nose is a small, self-contained device that attaches to the end of the tracheostomy tube.  When Ernie exhales, the Swedish nose retains the heat and moisture and uses it to warm and humidify his breath when he inhales. Unfortunately, he can't wear his speaking valve when he wears the artificial nose but it is great when he is working in his office or sitting in the den reading. 

The call to the manufacturer ensued when the box of noses was delivered with no instruction.  We did not know how the humidification worked.  Were we to soak them in water first (they have little filters on the side)?  Our local ENT nurse had never heard of them.  The manufacturer was great--told us they were ready to use out of the box and explained the mechanism.  We will have to see what the otolaryngologist thinks of this when Ernie has his follow-up on Monday. 

Relaxing the Rules

Today we had the first of five home health visits designed to help us learn how to care for Ernie's new equipment.  We weren't sure what to expect but got a very pleasant surprise.  According to the home health care nurse, the protocols we learned in the hospital are to insure a "sterile" environment.  This involves gallons of bleach, saline solution, distilled water and boiled water, tons of cotton swabs and gauze and countless pairs of sterile gloves.  The way we were going through these supplies, I was going to check into purchasing by the case. 

Luckily, the nurse explained that at home there is not a real expectation of maintaining a sterile environment.  Instead, our goal is a "safe" environment.  We still need distilled water but in many cases bottled water or even tap water is fine.  The cotton swabs and gauze have been replaced by a clean, white wash cloth and towel.  Disposable gloves are fine but so is washing your hands. 

This news was liberating.  We could not imagine how one could travel--all these supplies would require a suitcase of their own.  Also, without the need to organize all these supplies, we are saving a lot of time and effort.  All in all, a good day. 

The Silence Is Broken

What a great day.  Ernie has his voice back!!  He thinks that he doesn't have as much volume as before but the speech pathologist reminded him that he still has a lot of swelling and that he can expect some improvement. 

His only complaint--his value is purple.  Evidently, they come in different colors, including clear, but this is the only one they had in stock that was the right fit.  The purple color is the choice for hospitals so the valves can be quickly identified.  Luckily, Ernie is secure in his manhood and is not afraid to sport flashy colors.  He is supposed to cover the speaking valve with a scarf in cold weather anyway so it will not be obvious. 

Now we just have to work on eating again.  They did a swallowing study in the hospital and, due to all the trauma from surgery, he has a lot more swelling.  This makes it difficult to get even water to go down the right pipe. So, no food or drink besides water until he gets another study in a couple of weeks.  I know he is getting better because he is getting interested in food again.  However, he does not want to get aspiration pneumonia so will wait until he gets the all clear from the doctors.  Until then, the mic-key button will get a good workout. 

Released At Last

Yipppee!!  Ernie was released from Wake Forest Baptist Medical Center yesterday. The ENT docs showed up about 8 AM to remove his temporary trach tube and insert his permanent tube.  The permanent tube is smaller and designed for people who are not totally reliant on their tracheotomy to breath.  Although he does not have the Passy Muir speaking valve yet, this allows him talk a little bit--enough that we could dispensed with the notebook he was using to communicate. 

Before he could be released, his nurse--Lisa--made me pass both a practical and oral exam.  I had to give Ern his meds and food through his mic-key tube.  I also had to demonstrate that I could remove, clean, disinfect and reinsert the "inner cannula" of the trach tube. The trach tube is really composed of two tubes.  The outer cannula is never removed as it holds the tracheostomy open.  The inner cannula goes inside the outer cannula and is removed for cleaning and then locked in place.  Once I had demonstrated everything, I had to describe to her, in detail, everything I had done. I guess I did OK as we were soon on our way home.

There is a lot to learn about caring for his new "equipment".  Right now it seems to take a lot of time but I can see that by the end of the 4 to 6 week recuperation period it will be routine.   We are starting to gain confidence. We have now been home for 24 hours and have successfully completed one full cycle of treatment almost on our own (my sister was here but is now gone).  Also, Ernie's John's Hopkins doctor that we had originally chosen to do the surgery called this morning and said all the right things. 

Ernie's next step is to get his Passy Muir speaking valve, hopefully tomorrow afternoon, and master it.


  

Almost Home

Tomorrow is the big day!  Ernie will be discharged after 10 very long days in the hospital.  We have all of our supplies and equipment, except for the humidifier that will be delivered and set up at the house tomorrow.  We will also receive home health care visits for a few days to make sure we are comfortable with all of our new duties. 

The only thing we are missing is the Passy-Muir speaking valve.  Evidently, they did not think Ernie was ready today and the speech department doesn't work on Saturday so we will have to go to the doctor's office on Monday to get that.  Until then, we will continue to communicate with a mixture of sign language and writing. 

Many folks have inquired about visiting.  When Ernie gets used to his speaking valve, he will be anxious to talk up a storm.  Until then, he welcomes your text messages (336407-3800), emails to fackelmn@ix.netcom.com or good, old-fashioned snail mail. 

Full Circle

This morning we made the trip from the ICU back to the Cancer Center.  We had hoped that Ernie would be fitted with his Passy-Muir speaking valve today but evidently we got to the Cancer Center too late and the team that does that had already left. 

The doctors said that if "all goes well" Ernie will be discharged on Saturday.  This means that tomorrow will be a full day.

Besides being fitted for the Passy-Muir valve, we have to meet with the dietitian about his food and receive instruction about how to use and maintain the famous mic-key button (aka "feeding tube") and trach so that we can perform all the functions that the nursing staff has been doing.  Plus we need to get all of equipment and spare parts for the feeding tube and trach..  Last, but not least, the ENT' docs will swap Erne's current trach for a permanent one.  It seems that we will be very busy adjusting to our new routine. 

As always, Ernie is determined to get things done so he can leave ASAP.  He is very tired of being in the hospital and very tired from being in the hospital.  Now we know why they told us to expect a four to six week recovery. 

Persistence Pays

Ernie spent another day in the ICU, once again largely due to his persistence. 

Although the Cancer Center has one nurse for every five patients, it seems that everyone rings their call buttons at once.  This concerned Ernie as he can not anticipate when his trach will get clogged and he will need suction.  No suction, no breathing.  Also, he is hooked up to so many tubes, it is impossible for him to go seek help.  Thus, he was determined to spend another day in the ICU where there was one nurse per patient. . 

The family galvanized behind him.  We followed Ernie's tried and true approach.   Do not argue and do not get mad but do not agree with the plan.  Simply keep repeating  your position over and over until you either convince the other party or wear them out.  So, whenever any doctor, nurse or staff member approached Ernie or one of us about moving to the Cancer Center, we repeated our mantras... "We do not feel that the Cancer Center is a safe place for Ernie right now" or "Ernie is not a typical trach patient so the family does not think he should be moved yet.", etc.  Pretty soon the subject was dropped and Ernie spent an uneventful day in the ICU.

He will be moved back to the Cancer Center sometime tomorrow but now he feels ready for the move. 

ICU

The ICU's at WFBMC are only 10 beds large.  In Ernie's ICU, only 6 of the beds are occupied.  That turned out to be a blessing, as he developed lots of issues last night that required his nurses attention.  Early in the evening, his head suddenly swelled and, along with it, his blood pressure spiked.  They gave steroids for the head and BP medicine to get his pressure down.  His blood pressure gradually dropped to normal but then kept going down more!  Finally, they gave him IV liquids to get it back to normal.  He also needed a catheter.  By about 2 AM, things were under control and he slept fitfully until rounds started at 6 AM. 

It is now up to the ICU docs and ENT docs to convene and decide whether Ernie can move back to intermediate care in the Cancer Center.  The ENT group has no idea why his head swelled and thinks he should be off the steroids the other docs gave him.   From their perspective, he is doing better than most trach patients.  Ernie is worried about his swollen head, a scleroderma renal crisis (high blood pressure can be a sign of that) and getting the attention he needs when the trach gets clogged and he needs suction.  So, he is working on the docs to let him stay in ICU another day. 

One of the most difficult parts of all this for Ernie is the temporary loss of his voice.  Although he has been writing copious notes to the docs, it is sometimes difficult for him to get the attention he needs.  The family has decided that one of us will be with him 24/7 until he can talk again.  I will be the night shift, my sister will take the morning and Ernie's brother the afternoons.  Hopefully, by Friday they will give him his permanent trach tube and he will be able to advocate for himself.   

Greetings From the Family Waiting Room

We finally made it to Tuesday morning.  I never thought any one would look forward to surgery but Ernie was definitely looking forward to this day. 

I went with him to the anesthesia area where he met the rest of his team. He has been very concerned about getting the exact kind of feeding tube he would like--a mic-key button. He had discussed this earlier with the general surgeon who said he would try to accommodate Ernie but could not promise anything.   Ernie immediately went to work on everyone, letting his desires be known.  By the time I left for the waiting room, no one dared say "feeding tube".  Instead, everyone was talking about the "mic-key button.". 

Once in the waiting room, it only took about 30 minutes before the surgeon came out to declare victory.  They were successful in intubating Ernie.  The surgeon got it on the second try!  (According to the web three strikes and you are out).  Minutes after the surgeon left to go back and work on the trach, the nurse called to reiterate that Ernie doing well.  She also told me that right before he went to sleep, she showed him his mic-key button. 

UPDATE:  The surgeon just came out to say that the trach was in!  On to the mic-key button, which is expected to take another hour.  Looks like the surgery will be done around 10:30 AM. 

UPDATE #2:  Surgery finally concluded around 12:15.  They evidently ran into some difficulties with the feeding tube.  But they did give him his wish.  He has the mic-key button.  We hope get to lay eyes on him around 1:15.  The original plan was for Ernie to spend tonight in the ICU.  We will soon hear what the doctor has now that the surgery is over. 

Count Down

Today was, thankfully, a busy day.  Ernie had lots of visitors and phone calls from friends and family as well as from the myriad of doctors that will be involved in his surgery.  These were welcome distractions. 

While the conversations with friends were more much fun than talking to the doctors, we did gain peace of mind by having the difficult, but necessary, medical discussions.  Ernie let each of the specialists--the anesthesiologists, general surgeons who will be inserting the feeding tube, and ENT doctors who will be doing the intubation and trach--know his expectations.  He told them exactly what kind of equipment he wanted and what he expected the outcome to be.  I'm not sure that these "baby docs" are used to getting this kind of direction from a patient but they listened to everything he had to say and seemed up to the task.

His scleroderma doctor from Baltimore called to check up on him and his local Internist stopped by to make sure all was well.  Knowing there are so many people in Ernie's corner, we will both sleep better tonight. 

(Day After) Halloween Scare

Ernie had such a  great day on Friday, we wondered why they insisted in keeping him at the hospital.  Saturday, about 4 AM, we figured out why.  Ernie woke up and could feel his airway becoming very constricted.  He rang the nurse, who rang the on-call doctor, who never came!!  Four hours later he got his breathing treatment.  Luckily, this incident was not as severe as the one that landed him in the ER. 

The fact that treatment took so long gave us a good scare.  The nurse was also upset about the incident and notified her supervisor.  The ENT department apologized for the "communication problem" and now Ernie has the direct dial number for the Rapid Response team. Truly fortunate that Ernie is still able to talk and advocate for himself..  At this point, the WFBMC doctors may be wishing they HAD transferred him to John's Hopkins!

Bits and Bites

The doctors and nurses have begun doling out bits of information about Ernie's surgery and recovery.  After all these years, we are familiar with this routine.  At first we found it maddening.  Why not just tell us everything at once?  But now we have come to appreciate the fact that it is easier to handle scary things if you have time to digest them a little at a time.  Here is what we know so far...

The surgery is tentatively scheduled for 7 AM on Tuesday.  There will be three doctors: Ernie's laryngologist (this is an otolaryngologist with an extra year of training) and two general surgeons.  The laryngologist has the hardest jobs of sedating and inserting the trach tube.  The other surgeons assist and then insert the feeding tube. 

Depending on how he does, Ernie may spend the first night in the ICU.  After that he will return to his room in the cancer center.  He will not be able to speak for the first few days--until the doctors change the trach tube.  Then he will be able to talk to his hearts content.  Knowing Ernie, this period of enforced silence will be difficult.  I'm trying to decide how many pens and tablets of paper I might need to supply! 

The feeding tube people will use the recovery time to get Ernie adjusted to the canned food.  They will start with a minimal amount and try to work up to a full portion before he is discharged.  Since this is a permanent tube, it is different than the one he had previously so we will also get instruction on how to use it.  There are many feeding options.  He can eat at regular intervals or he can eat while he sleeps.  We are told that there is even a backpack you can wear that holds this food so you can eat on the go if you want to.  This will be a huge improvement for Ernie.  Instead of spending 5 hours a day eating as he currently does, it will only take minutes per day of active time.

Once he is home, it will take another three weeks or so to get his strength back and for his throat to get over the trauma of the surgery and to adjust to the trach tube.  Luckily the weather forecast does not favor golfing, so he picked an excellent time to be out of commission. 

Here We Go Again

As many of you already know, Ernie is currently at Wake Forest Baptist Medical Center awaiting surgery on Tuesday morning.  He is out of intensive care and can now receive visitors and phone calls (3336-407-3800 cell #).  He is in room 907, 9^th floor, Cancer Center.  Parking deck C is the closest deck for visitor parking.  We had been planning to go back to John’s Hopkins for surgery but the doctors agreed that it is now too risky to move him. 

I have spoken to many of you in the last two days but for those I have not, here are the details.  Ernie has been gradually losing his ability to speak and swallow food.  His scleroderma (autoimmune disease which means hard skin) caused an exaggerated response to the radiation treatment for his cancer and the subsequent surgery to remove more cancer in his lymph nodes.  As a result, the skin on his neck has become harder and harder.  He also has a lot of internal swelling in his neck from the trauma of radiation and surgery.  The combination of hard skin and swelling finally landed him in the ER on Wednesday night when he had a coughing attack and could not breath.  This combined with his increasing weight loss (can’t eat enough calories to maintain his weight) and his fatigue from the sleep apnea (another side effect of the swelling in his throat) have made surgery necessary. 

He must have a tracheotomy and feeding tube inserted.  We have been assured that he will still be able to eat what he can by mouth and he will still have his current voice.  He will also be able to take a sledge hammer to his C-PAP (sleep apnea) machine—something he is very much looking forward to doing.   

He will have to be in the hospital for 5 days following surgery, so I am looking forward to welcoming him home on the November 9 or 10. All that said, this operation is more risky for Ernie than for any of us.  Because the range of motion of his head and neck is limited and the skin on his neck is so wooden, there is some small chance that they will not be able to sedate him and, if they do, there is some small chance that they will not be able to do the trach.  Thankfully, no one is worried about the feeding tube! 

I wanted to let you all know Ernie’s status as it is your support that has kept us going through this long and arduous process.  It is so comforting to know that we are not alone.