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Husband news 2015 May

May 2015

After several complications and hospital stays resulting from both the cancer and the cancer drugs Tony had been taking, he passed away this month.

We miss him.

January 2015

It's been almost a year since we found out about the metastasis.  The cancer spread was unexpected by both the oncologist and the ENT -- and by us.  In fact the oncologist said "what the hell?" and at first talked about it being possibly a new cancer since Tony had a smoking history.  The biopsy indicated the same cancer as the throat, so metastasis was the diagnosis.  It is technically not "lung cancer", but "head/neck cancer metastasized to lung".

March 2014 Tony started a traditional chemotherapy, Taxotere, which kills your good cells along with the cancer cells.  The side effects were fairly drastic for the first week or so, but would improve for week two and three after a treatment.  A few days after the first infusion, he passed out, resulting in me thinking he was having seizures, an ambulance ride for a local ER visit, and ultimately, an evaluation at Vanderbilt by a neurologist.  It was determined that seizures were unlikely, and low blood pressure caused by the drug was likely the cause of the fainting.  It also took his white blood cell count dangerously low and we spent three nights in the hospital on multiple strong antibiotics and injections of something to help increase the WBC count.  The chemo dose was reduced to 75% for the remaining five infusions, and I gave him an injection to boost WBCs the day following each infusion.  The treatment worked very well in reducing the lesions, but did not result in remission.  At the end of this treatment he had some small blood clots in his arms caused by the drug (another ER visit).  They were cleared up by a regimen of Aspirin.

In August 2014, he could once again feel the tightness in his chest and CT showed progression so we started another treatment.  Since September, he has been receiving a weekly infusion of an EGFR inhibitor (Epidermal Growth Factor Receptor) and is also taking an oral trial drug.  Scans show a tiny reduction, but they call it "stable".  This is deemed successful and he will stay on this treatment until the cancer figures out how to overcome the drug and progresses again. This treatment does not kill the good along with the bad, so side effects are not as bad as the previous treatment.  The trial drug raises his blood sugar, so he takes something for that now.  They promise it will go back to normal when he gets off the oral cancer drug.  When asked how he is, I say "not too bad, but not great".  It is all relative.  We have been able to take a couple of short vacations, but he is not up to a lot of activity each day.  He has lost over ten pounds with this treatment, another ten with the previous treatment, which brings the total weight loss to about 35 pounds since 2012.  He didn't have any extra weight to lose, so he is pretty skinny.

Throat (original cancer site), thankfully, still looks clear and there are other clinical trials that can be used after this one for the metastasis.

February 27, 2014

Things change so fast.  We learned a few weeks ago that the throat cancer metastasized.  Tony has lesions in both lungs.  No disease in any other location is indicated on the PET scan.  Treatment begins next week.

December 24, 2013

A much more merry Christmas this year.  A good CT scan on Monday, December 23rd and continued healing and returning strength made it so.  If you look back to Christmas Eve a year ago, you'll see that I wished for Tony to be able to enjoy his favorite Italian Christmas Eve dinner, The Feast of Seven Fishes.  Well, this year we had it, he made it, and even though his version is with only three fishes, it was great.

It's not a real fancy, homemade version.  Canned tomatoes and fishes make it simple.

He did get out the pasta maker that had not been used in many years.

Merry Christmas, everyone!

September 23, 2013

Another CT Scan and a visit with the Radiation Oncologist.  She is the one actually responsible for the cancer killing in our case.  She says "Your CT Scan looks great".  Hopefully, we will have a happier Fall this year.

August 14, 2013

A visit with the ENT and a visual scope.  "Your tongue is as smooth as a baby's bottom".

June 7, 2013

Tony had a PET scan and another visual exam with a scope and the news is great!  No evidence of disease at the original location or any where else from head to thigh.  His eating is improving and he feels better each week.  Retirement is two weeks away and the Tennessee River and golf course are calling.

April 27, 2013

I am way behind on updating this and I apologize.  Things have been uneventful, I suppose, and you don't think it important to report non-events.

Recovery is very, very slow, but Tony seems to be recovering nicely from the radiation and chemo.  His throat is no longer painful, he is eating some food again, the feeding tube was removed a few days ago, but he still uses about three Ensures each day for supplement.  Eating is very slow as his saliva is almost non-existent.  That may or may not come back.  His stamina is about 50%.  It will take a full year to get back to 100%.

Visuals with a scope and a CT scan look good, except that swelling and mucous still prevent getting a good look at everything at this point.  That is normal.  He will have a PET scan at the end of May.  I think that image will be more conclusive.

His work hours have increased from the original two hours a couple days/week.  He works half a day about three days/week now.  I take him there and he rides home with a co-worker.  He doesn't sleep as much as he used to during the daytime, but he still sleeps in the car, so no extended driving for him yet.  Plus, if it were up to him to get home, he would stay at work too long and be even more fatigued driving home.

The extent of his physical activity includes a little yard work, his physical therapy exercises, and we walk about one-half mile a few days a week.  He has played three or four rounds of golf.  Some days he feels pretty good, but it is very easy for him to over-extend himself on those days and then he has to recover the following couple of days.

We are confident that he will recover from the treatment, and hope and pray that the cancer didn't make it through.

Thank you to all who have asked.

February 12, 2013

The good news is that the ENT did a visual scope last Wednesday and the tumor is not visible.  Also, the hamburger (their term) that was his tongue and throat looks healed on the surface.  So that is milestone #1 passed with flying colors.  The bad news is that it has been six weeks since the last radiation treatment and I can't say that a lot of improvement can be seen in the way he feels.  The pain is still in full force, but now in the form of nerve damage rather than blisters and sores.  He still sleeps 50-75% of normal waking hours most days and has a round of vomiting every week or two (today being one of those rounds).

The tube feeding is going very well, in fact, probably too well.   The problem with the tube is that there is a tendency for people to get too comfortable with it since the formula provides 100% nourishment and you don't have to worry about getting your calories, vitamins, etc.  But what you don't use, you lose. The radiation damage greatly increases the loss of function so it is imperative that the muscles and tissues are used every day.  He is supposed to be eating six tiny meals by mouth every day for the purpose of maintaining what function remains of the tongue and throat and to gradually wean from the tube feeds. There has been only a few days that he has three tiny meals, much less six.  He is also supposed to be doing three sets of swallow and jaw exercises every day, but that doesn't always happen either.  He is scheduled for a physical therapy appointment this week to help him regain strength and muscle tone.

He is very anxious to return to work, so I have driven him a few times.  The first day he stayed four hours and slept hard for the following 20 hours.  We reduced the duration to two hours and that works out better.  Consecutive days with outings run him down pretty bad also, so with at least one medical appointment each week, work is limited to one two hour session per week.

My husband is not a slacker or a quitter so I feel he is doing the best he can.

Just to put things into perspective, the total radiation dose he received to his neck over a 7 week period for cancer treatment was

1,400 times more than

the Federal occupational annual radiation dose limit for nuclear plant workers.

No, that's not a typo.

December 31, 2012

What a way to end the year.  The last radiation treatment on the last day of 2012.

This friend has definitely been useful, but we are glad to put him on the shelf.

The weekly doctor visit on December 26, resulted in Tony being admitted to the hospital as he had lost 8 pounds.  It was time for the feeding tube.  So we spent December 26 through Saturday, December 29 in the hospital in Nashville, getting fluid and having surgery for the tube, and learning to use it.  He was very disappointed, as he was determined to get through this without the tube, but it is such a relief to not have to be tortured with trying to get food and liquid past that painful mouth and throat.  The feeding process is very simple and the whole thing is not near as bad as we imagined it to be.  Right now we are doing five to six feedings per day, and that can be reduced to four or even three if the stomach is gradually worked up to the larger volume of liquid over time.

How long will he have to use the tube?  That all depends on how quickly the tissue heals enough that he can get enough nourishment by mouth.  They say it will be two weeks before he feels any real noticeable improvement in the tissue, then it is anyone's guess how long it will take to heal completely.  My feeling is that they will not remove the tube until plenty of time has passed beyond full healing and eating completely by mouth.

He feels much, much better now, both physically and mentally.  The whole eating thing had consumed both of us for a few weeks and it is such a relief to not have to worry about that.  Now to begin the new year with a fresh outlook, healing, and getting back on track with life.

December 24, 2012

I see that it has been a month since I have posted.  We have been spending weeknights near Nashville for the past four weeks.  There have been ups and downs during these weeks, but you probably don't really want to read about them.  Truthfully, I don't want to type it all in so I'll be general.

Things have gone downhill since Thanksgiving, but are still within expectations for this treatment.  They said it would be very intense and they were right.  We have heard several times from various medical people over the past month that this is one of the more painful treatments.  They say his mucositis (mouth/throat sores) is the worst they've seen.  He told me to imagine the worst canker sore you have ever had, but it covers the back of your throat and the full underside of your tongue.

His chemo is completed and he was supposed to get a radiation treatment today, but she cancelled it so that he would have four days to heal a little bit before finishing up.  He has Wed, Thurs, Fri. this week, and now Monday next week to make up for the one missed today.  They also cancelled his 7th (last) chemo due to the mouth sores.  They said 6 chemos with this type cancer is the standard so they are not concerned with him having only 6 instead of 7.

He has been determined to avoid the feeding tube, but because of his mouth, they are really recommending he go ahead and get it.  He felt so bad yesterday that he is considering getting it done.  His mouth hurts all the time even with three different pain meds and numbing mouthwash, eating/drinking is getting the best of him.  They can't believe that he is still eating and drinking enough and has lost only a couple of pounds.  Also, the very short list of things he can tolerate in his mouth and that are not too thin or too thick is getting shorter.  He will have at least two bad weeks after the last radiation treatment before things start to get better.  That is still a long time to eat and drink through all that pain.  We learned that adequate nutrition is not only important to maintain weight during treatment, but that his long term health can be affected if he does not get enough nutrition for the mouth sores to heal properly following treatment.

Thank you, once again, to those who have emailed and asked about us.  We can see the light at the end of this long dark tunnel.  One year from today, I pray that my hubby will be preparing the "feast of the seven fishes", an Italian Christmas Eve tradition.

Merry Christmas to all.

November 25, 2012

Chemo 3 of 7 and radiation 12 of 35 completed this week.  Chemo is on Wednesdays and true to form, the effects hit him Friday night and Saturday.  Thanksgiving Day he felt very good all day and ate a big plate of pancakes (lots of syrup to make them go down) and eggs for breakfast, cooked a turkey breast and helped with the rest of the Thanksgiving meal.  He was able to eat almost everything we had, but had to put a lot of gravy on it to make it go down his blistered throat smoothly.  He had to leave off the pecan pie, but was able to eat a piece of pumpkin pie.  Thankfully, he has not lost weight since his treatment started, in fact he had gained a pound at Wednesday's appointment.  Maintaining weight is critical during radiation treatment, especially for head and neck cancers, due to positioning.  He still has a little over a month to go and the blistered throat will only get worse with every radiation treatment.  Instead of skim milk, we now have whole milk for drinking, cream and half and half for cooking.  He eats two eggs almost every morning instead of only two per week.  Vegetables are now made with cream so that he gets their nutrients plus needed calories.  Four Ensures at 350 calories each make for about half of the calories he needs.  I have a feeling that by the end of this he may be drinking 7 or 8 of them per day just to get calories.

Here is my hubby in his element - cooking.  

November 15, 2012

Chemo round 2 of 7 and radiation 6 of 35 yesterday.  Last week he did have nausea starting Friday night into Saturday.  He had stopped taking the nausea meds on Thursday.  Yesterday she told us that typically the first round is the worst and that the effects are usually the same each treatment for the same person.  So we should expect and be prepared for the nausea to begin this week on Friday and be diligent with the nausea meds Thursday night into Friday.  He feels fine this morning and is on the phone with work.  What a guy my hubby is :)

Thanks for your kind and encouraging emails.

November 8, 2012

The first chemo and first radiation treatment happened yesterday.  It went fine.  He had no nausea and ate normal food last night.  So 1 of 7 and 1 of 35 over.

November 2, 2012

PET scan - Done.  Biopsy - Done.  Fitting for the radiation treatment customized mask - Done.

Both the PET scan and the biopsy results bore out what we were told at the first visit at Vanderbilt - that the cancer is a very treatable one and the chance of recovery is very good.  The important thing now is for my husband to stay strong through the treatment which is going to be a very painful and challenging one.  Weight loss can jeopardize the radiation treatment due to play in the mask which is tightly fitted in order to ensure consistency in dumping the radiation dose to the critical areas.  Eating is a challenge due to burned throat and neck tissues.  Eating during treatment is not only essential for nutrition and maintaining weight, but also for maintaining function of the swallowing muscles and the jaw joint which will be damaged by the radiation.  In this case, "use it or lose it" is 100% applicable.  We have made lists of foods that will maximize nutrition, require chewing to use the jaw joint and muscles, and of course the swallowing muscles.  In other words, drinking Ensure and the like, is not good enough.  Luckily, he is used to eating pretty well, so he doesn't have the added challenge of getting accustomed to healthy foods that are not appealing to you if you are a packaged and fast food junky.  Of course, he won't be able to taste much anyway so it really doesn't matter.

Treatment is scheduled to begin November 7.  Two months and 2 days from diagnosis day.  Chemo will be one day a week and radiation treatment will be every day M-F.  Both treatments will run for 7 weeks concurrently.  As I understand it, the primary cancer killing method in this case is the radiation and the chemo makes changes to the tumor to enable the radiation to work better.  I am hesitant to count on it actually happening on this date since things seem to change all the time.

October 23, 2012

A thorough biopsy was done today under full anesthesia.  The doctor took several samples and had a thorough look at everything.  We already know it is cancer so this biopsy is for more indepth evaluation for finalizing the treatment and also for banking the tumor for research.  Vanderbilt is a great research facility as well as a great hospital.  The doctor told me that he found no surprises and nothing worse than we already know about.  He said again that there is an excellent chance of full recovery.  That is not to say that the patient will be back to normal following the treatment.  There will be lifelong effects from the radiation treatment.  The throat is a small area packed with tissues that perform other functions.  In addition to tongue functionality, the salivary glands, spine and spinal cord, etc., are there.  The radiation exposure must be carefully planned in order to put maximum dose to the tumor with minimal dose to these other critical tissues.  Salivary function will be affected no matter what and the function lost will never return completely.  The ENT specialist is one of the top 100 doctors in the country so we feel pretty confident, but still with cautious optimism.

October 18, 2012

PET scan results:  No cancer in any other location.  The original tumor in the throat and the affected lymph nodes looked to be as they expected.  So, no surprises.  Thank goodness.

October 17, 2012

FINALLY, the PET scan today.  Things take forever.  I have learned that doctors are terribly out of touch with scheduling and say things will happen at a certain time, then when you get to the people who actually schedule things, there is no room for you on that day and you have to wait longer than promised by the doctor.   It is the same farce that I experienced for years in my workplace.  Managers promise and commit to certain tasks and schedules, completely without regard to what can actually be crammed into a specified timeframe.  It is very disheartening for my suspicions to be validated that the medical field is as ridden with unrealistic goals as I experienced in my former career, and I suspect is true in all other fields and businesses.  While I realize that everyone can not be first, and we are no better than all the other patients, it is very frustrating to wait so long for each step.

Another worry is that I was(am) concerned about the upcoming Thanksgiving and Christmas holidays.  After hearing so much from the doctors about it being critical to not have a break in the radiation treatment to ensure the best possible chance of success, I fear that the treatment might be halted for these holidays.  We were told by the medical oncologist that "they" will likely take off for the actual Thanksgiving day, but missing one day will not be a real problem and it will be tacked on to the end.  Then, of course, the scheduling lady says "well you know the clinic is closed the week of Thanksgiving".  So, again, doctors tell you a lot of things they know you want to hear.  I guess time will tell the actual holiday schedule for technician worker bees at Vanderbilt.

We also saw the radiation oncologist today for the first time, and had a second visit with the medical oncologist who will direct the chemo.  The "real" biopsy is next Tuesday, and hopefully, the fitting for one of these things,

(a custom fitted mask for each patient's radiation treatment), can happen later next week.  Again, these are time frames according to the doctor and likely will not happen in the real world of the worker bees.

And, again, hopefully, treatment can finally start the first full week of November.  I think I have spoken and typed the word "hopefully" more in the last two months than all of my life put together.

September 27, 2012

We came home from Vanderbilt today with encouragement. Based on another scope and physical exam and my husband's good health and history they believe it is a very treatable cancer.  But we go back next week for a more thorough biopsy of the actual tumor which will, hopefully, validate their initial beliefs about the cancer.  (The initial biopsy was of only the lymph nodes in the side of the neck.)  There will also be a PET scan to determine if there is more cancer in other locations.  What I had feared the most is the morbidity associated with having a tongue that has lost some functionality due to the tumor, surgery, and/or radiation treatments.  We were very happy to hear them say that tongue reconstruction is quite successful these days.  They will likely do chemotherapy first to see how the tumor responds, then add radiation if needed.  Surgery may be done if these treatments aren't doing the job.   "You're going to have to keep him" is what one of the doctors said.  One can only hope that a specialist would not say that on an initial visit if he was not confident.

So, all is not good, just potentially better.  It still has to be dealt with and the treatment will not be easy.  But, chances seem good that I will have to keep him.  :)

Many thanks to everyone for thoughts and prayers and words of encouragement these last few weeks.

More news later.


September 12, 2012

Where to start.  The beginning, I suppose.

My husband has cancer.  We found out on September 5, 2012.   According to the ENT (ear, nose, and throat), based on the CT scan it appears to be Stage 3 or 4 which is typical for a squamous cell carcinoma on the base of the tongue.  The biopsy indicated that it is a cancer that responds well to treatment and is relatively slow growing.  That bit of news made us feel so much better.

We are scheduled for Vanderbilt Medical Center in Nashville, Tennessee on September 27.  My husband insists that we will carry on with our normal routines until we can’t.  That means he goes to work, our son goes to college, and I do whatever it is that I do every day.  So far, my days have been bleak.  There is no shortage of chores around here to keep me occupied, but getting started each day is a challenge.

I will spare you the gory details of this cancer as you can search and find all sorts of details for yourself if you are interested.  I have done too much research and have vowed to stop.  Our case will be its own.  My husband has none of the other diseases that plague our nation these days.  He is not overweight, has great blood pressure, eats well, stays active, and all these things will go far in his withstanding treatment and recovery.

He is scheduled to retire next summer and he is due.  He has a thing he says about it:

The 4 G's.

Golf.  Garden.  Gourmet.  Gone fishin’.


Rose said...

Just came to check up on your hubby...yep, definitely a positive sign if the doc says you are going to have to keep him. They usually don't want to give false hope.

Unknown said...

I was so glad to hear your news the other day. And he's definitely a keeper!

Deanna said...

Following your path...glad to hear that the Dr. was quite confident that your husband will be around for awhile and that you just "have to keep him". You are both in my prayers.

Rose said...

I hate the hurry up and wait of medical situations....but at least the cancer is not anywhere else.

I just been home to Tennessee...

Roan said...

I haven't been on for a while, so had to check in for Hubby news, which sounds very good.

Rose said...

How far will you have to drive for the radiation treatments? I hope not so far...still praying for a good outcome.

Rose said...

I hate that the drive will be so far for you....still keeping your situation in my prayers.

Gail Dixon said...

Just read Nov 2nd entry. Praying that tomorrow's first day of treatment will go well. Thinking of you both...

Rose said...

Just checking in to see if he got to have them on schedule.

Rose said...

I am not sure what to say...other than I am just checking in and that I am thinking of you guys.

Deanna said...

Glad to hear that he is progressing and maintaining his weight. My Dad had radiation treatments on his throat and had trouble with the swallowing. Keep the faith, I'll keep praying!!

Gail Dixon said...

Amy, I just lifted you both up in prayer. Asking God to relieve hubby's pain and heal him completely, and grace and patience for all helping him. I can't imagine how horribly painful those mouth sores are. My heart goes out to y'all.

Judy said...

I'm keeping both you and your husband in my prayers! I hope and pray all is going well.

Gail Dixon said...

Glad to read the latest update. It sounds like it's all going as well as it can at this point. Thinking of you both.

Gail Dixon said...

Thanks for the update, Amy. I had been wondering. Progress is being made at least. The fact that he has the desire to even return to work is a good sign. Now he just needs that same desire to eat and work those muscles!

Meggie said...

I read your post today about your husband playing golf. He has come a long way. I congratulate both of you....this cannot be easy.

Rose said...

It's been a long slow road, but sounds like things are slowly but surely improving. I am glad for both of you.

Meggie said...

Great news on your latest post...

Nancy said...

So happy for you two at the recent new. Bright blessings as you move forward my friend.

Tammy@Simple Southern Happiness said...

Will lift your hubby in prayer for continued good health and the cancer has been eradicated. My friend had this tongue cancer and reconstructive surgery of her tongue, she is going great and it’s been 3 years now. We thank GOD for his mercy and for dr's.

GOD keep and bless you both.

Tammy@Simple Southern Happiness said...

I know that had to be the best Christmas present that your hubby was able to eat, the dinner looks wonderful. I pray this coming year GOD will continue to bless Tony with restored health and keep you both safe.

Gail Dixon said...

So sorry for the latest news. Still praying!

Gail Dixon said...

Amy, what is the prognosis of late? I still have your husband on my prayer list.