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June
15
2021

June 15, 2021

Just a quick update to let you know that yesterday Eric was admitted to the hospital. We both believe this is actually a good thing.  
He has not eaten for weeks at this point.  We have been trying since last week to get him scheduled for the PEG tube.  

He has been in excruciating pain and, with the help of my pharmacist neighbor, Gretel, who told me what medications to fight for, I was able to get him some relief Saturday night.  However, they were still keeping the dose low and he was still in such pain. 

Now that we are in the hospital, because he is under constant supervision, they were willing to give him the higher doses.  He is also getting constant hydration.  He feels and looks much better.  They are letting me stay with him 24x7 because I am his voice. 

We are still waiting on the PEG tube surgery. It was scheduled for this evening but his Blood pressure was high and most importantly, his ability to clot was too low. They are now giving him plasma, Vitamin K and finally adding dextrose (sugar) to his hydration.  Hoping tomorrow he can get the surgery.  

Looks like we may be in the hospital for a few more days.  Your prayers for Eric to get strong enough for the surgery and get the PEG tube are appreciated.  

We have always known we were blessed with a wonderful family and incredible friends.  However, going through this we can really see it.  Thank you for all your support!

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June
11
2021

June 11, 2021

Well, I would have to say this was a tough week.  As I mentioned in the last update, they stopped the treatments after the doctor visit Wednesday.  Eric tried the morphine but that did not help much.  He is still not getting enough hydration and still has not had any real nutrition in days.  He was hydrated at the hospital yesterday and today.  Hydration again tomorrow and Monday.

The Bad: But what to do about nutrition?  We have jointly made the decision with the doctors to get Eric a PEG tube.  They are going to try to get him scheduled ASAP.  We were worried about his ability to get through the surgery in his current state (only 140 pounds now).  The docs say he will be fine and he has to get the tube to be able to sustain the final treatments.  Not completing the treatments often times leads to recurrence.  

They are giving him a break on the treatments until Monday.  The plan is to have the last 5 treatments next week and the PEG tube will allow him to get nutrition and hydration through those treatments and into the next few weeks when his throat will still be unable to take anything through his mouth.  

The Good:  The doctor had shown me the tumor in his mouth a few weeks ago.  It had already shrunk but I could definitely  see it.  Today he let me see again and I could not see any tumor from inside his mouth. You can still see a lump on the outside throat but the doctors are very happy with the response.  

The Ugly: :-) What I did see is his raw red throat with sores.  It is no wonder he can’t get anything down.

Thank you for your continued prayers. We obviously still need them.  It is a journey and every day is a new adventure.

All our love,
Eric and Darlene 

June
9
2021

June 9, 2021

This update will be a bit different than we had hoped.  Eric's pain spiked to the point he could not even get water down. Yesterday they stopped his treatment and tried to admit him to the hospital because he was dehydrated and malnourished.  We were not able to get a hospital bed yesterday, so they hydrated him at the Cancer Center most the day. They told us to try liquid Tylenol last night and see the pain doctor this morning.

Today they gave him morphine and he had no radiation today nor will he have it tomorrow. They are hoping that by Friday he is able to swallow enough to get through the last five treatments. These last 5 will further kill his throat and it will take 2 weeks before he will start getting better. That is why he has to be healthy before they restart. They will make the determination on Friday to either restart the treatments, or they will again attempt to put him in the hospital until they get him in better health. 🙏🏻

Eric has such strength and apparently a great deal of pain tolerance.  The doctor said he had thought Eric would get to this point of intolerable pain sooner.  This morning Eric communicated (via writing on his phone - he really cannot talk now) that he feels he can do this!  I know he can!

Let’s end this entry on a very positive note.  Eric’s doctors feel that his tumor has been reduced by 75%.  He is responding well.  We just need to get through the last 5 and see what the PET scan says in 3 months.

Thank you all for your support!  The boat parade last weekend was incredible and just what Eric needed to lift his spirits.  And thanks to all who offered support yesterday when we had that minor set back.  You helped me especially get through it!

We love you!

June
2
2021

June 2, 2021

6th Chemo down!  14 days and only 1 Chemo left!

Things are getting tough for our hero.  He is finding it difficult to get anything down his throat - even water.  He has mouth sores and his mouth and throat are raw from the radiation.  Add to that dry mouth and he is in lots of pain and very uncomfortable.  To give you an idea, he texted me the other day while I was at the pharmacy; “I just finished a whole grape!”  Mind you - that took about 40 min of tiny pieces.  

We discovered this week that after the 7 weeks of treatment, they wait 3 months then do another CT Scan.  Once the treatments end the chemo is still in the system and tumor cells are still dying.  Please pray that this 3 month scan shows the tumor has completely disappeared!

In the meantime, Eric needs prayers to help him through these next 2 weeks of treatment and the following 3-4 weeks while his mouth and throat recover.  He really needs to push himself to eat when it is truly torture.  We also need prayers for his kidneys. They had to reduce the cisplatin dosage today because his kidney#s are out of normal range.  They are adding two days of hydration Monday and Friday to help with this.  

We are amazed at the support we have gotten from family and friends.  We can’t thank you enough.
Please keep praying for Eric!  We love you!

May
26
2021

May 26, 2021

The start of week 5!
At this point Eric has lost over 20 pounds and it is hard for him to swallow anything. His mouth and throat are raw. He has tried the Magic Swizzle but it has Benadryl in it and puts him to sleep so fast he has no time to eat before the numbness ends.  We just got viscous lidocaine which will not make him sleepy.  Eric said it does numb so hoping that helps.

Between the sores and dry mouth it is hard for him to speak. He does a lot of nodding and thumbs up or down.  The pain doctor wants to give him pain medication that contains opioids. Eric is reluctant but he may start that soon.

His kidney levels were going in the wrong direction but he buckled down and drank water constantly so now that went down a little.  Good sign.  

I start taking medical family leave on Monday.  I realized that I was not giving 100% to Eric  while trying to still work.  My job right now is Eric.  I am looking forward to concentrating on his treatment and care.  He may not be as excited. 😄  I am a drill sergeant with the water and trying to get him to drink some more Boost.  

Thanks to all of you for your support and prayers!  

Love,
Eric and Darlene  

 

May
19
2021

May 19, 2021

Week 4!  More than halfway!

The doctors say the tumor is still shrinking and now soft which is great news.  We are on track for the 7 week treatment schedule.

The side effects are not fun.  
Eric has lost 20 pounds.  He jokes that he now has his summer body.  Warning:  Eric does not recommend this diet for those of you at home.  :-) 
His mouth is very sore so he is down to consuming just liquids.  I get him a Dairy Twist shake every day to keep up the calories.  That seems to be his favorite.  It takes him about 2 hours to get it down.  We go to a nutritionist tomorrow to try to get some additional ideas to keep up his nutrition and weight.  

The doctor has prescribed Magic Swizzle - a mouthwash to use 20 min before eating.  (Thank you, Laura Lee for recommending we ask for it!). It will numb his mouth and throat with the hope that he can better eat. We hope to get the Swizzle today.  The pharmacy doesn’t have it and they are waiting for the formulation from the doctor to determine if they have all the ingredients or if something has to be ordered.

We have an appointment with a Pain Management Doctor on Monday.  The hope is to alleviate some of the pain so he can rest and sleep.  He has had a very hard time sleeping.  

Eric has a new companion that goes with him everywhere - his Biotene spray.  His mouth is so dry.  It is a major culprit to his inability to eat and sleep.  He wakes up with his mouth glued shut.  It also makes it very difficult to talk.  Between the dry mouth and the throat pain, Eric doesn’t speak much.  He has gotten very good at miming!

We can’t say enough about how much all the support from friends and family has meant to us.  Matt comes by every day to see what I need help with, Jess brought Eric all kinds of things to see if we could find something he could get down, and so many have texted with well wishes.  I see him brighten up when I read him the texts.  He knows you all care and that makes both of us feel very blessed to have you in our lives.

Keep praying!  27 more days!
All our love,
Eric and Darlene

May
12
2021

May 12, 2021

Today was the start of week 3!  Eric is not a complainer.  When people ask how he is doing he always says “good!”.  

The real story is that the side effects are getting worse. Taste is horrible and the sore throat has begun.  It is hard for Eric to eat anything.  He has lost 10 pounds.  Since he has 5 weeks to go, the doctor is warning him that he has to start eating more.  Eric is a trooper and trying all kinds of things to eat in the hopes he finds something doable.  So far fruit cups, protein shakes, strawberry applesauce and yogurt work best.  Today he tried a McDonald’s shake and while it wasn’t delicious, he was able to get it down pretty well. (Thank you, Dianne for the idea!)

He is also very tired.  He had been driving 3 days a week, but now I need to drive him every day.  More time for us to talk and sing in the car!  I have taken the next 5 Wednesdays as vacation days because those are chem/radiation days and very long.  Today we left at 7 am and returned at 4:30 pm.  

The cisplatin is starting to affect the kidneys.  Eric needs to keep drinking as much as he can—also not easy for him. He was told he needs to come in Saturday for an additional hydration session.  

While it is not easy on Eric, the wonderful news is that it is working!  The doctor showed me inside his mouth yesterday.  Dr. Poli said the tumor was pushing the uvula (that part that sticks down in your throat) to the other side.  He showed me that now the tumor is not touching the uvula anymore!  There is a pretty big space between the two.  

So the prayers are working and Eric is getting better.  Our biggest concerns are weight and kidneys so please keep the prayers coming.  

I just want to add that while we knew our family and friends would be there for us, we could never have imagined the kind of support you have given us.  We feel so loved and blessed.  It gives us strength every day.  One friend gave Eric a spoon at that says “A Spoonful of Strength”.  We keep it in the kitchen by the smoothie machine and it gives us strength and hope every time we see it.  We love you all!

May
4
2021

May 04, 2021

God is so good!  Today we met with the Dr. Poli.  Eric told him he feels like the tumor is smaller but “I can convince myself of anything.” 😄. Dr. Poli looked at me like - I don’t think so, and said it has only been 5 treatments. i.e. don’t expect miracles.  BUT when he looked in Eric’s mouth he excitedly said; “ you are right!  It has definitely shrunken.  It was pushing against your back throat and now it isn’t!”  He joked that Eric will be causing him more work if this keeps up because he will have to recalculate the radiation. Thank you, God!

Eric has already lost 5 pounds so the Dr. warned him to eat. Eric has lost most his sense of taste and has some nausea so the desire to eat is not there.  He is also tired.  But he still has the ability to swallow.  Dr. Poli said that halfway through the treatment Eric will get mouth sores and his ability to swallow will get much worse.  He warned us to make sure Eric eats well now.

So far the doctors and nurses have been accurate about everything.  They said he would feel fine for the first 2-3 days after chemo and sure enough, on the 4th day, Saturday, Eric hit the wall.  It was a tough weekend, but he is doing better now.  He has his next Chemo tomorrow and the cycle will begin again. Dr. Poli says the side effects will start getting really bad halfway through until the end.  

So we are trying to enjoy this time of “minor” side effects like loss of taste, nausea and major fatigue on the 4th and 5th days. We are bracing for week 3 and beyond. Eric is a real trooper- never complains. This will just be a blip in the memory reel some day.  

Keep the prayers coming!  They are working!