Radiation Mask & Surgeon Visit

We went to see the radiation oncologist again yesterday because we had to have a "mask" made for Greg and have him get his tattoos for radiation.   The reason for the mask is because of where the tumor is located, he needs to keep his head perfectly still for the radiation.  The only way to assure that is to have a mask made.  

We had no idea how this was done, so this was a learning experience for us!  You'd think, with this being the third time he's had cancer, that we'd be old hands at all this, but there is a LOT to learn with this one!   This first picture is of the "mask" in the warming tray.  Greg was warned that it would be kind of warm when they first put it on him, but he said it wasn't too bad.  

Here, they are fitting the correct "trays" (for lack of a better word) under Greg's neck and head, so that he's comfortable during the radiation treatment. 











Lifting the "mask" out of the tray to place on Greg's face.  

The two techs are helping to form the mask to Greg, and his Radiation Oncologist is helping. 










The mask is situated, and now Greg has to go through the CT scanner so they get a perfectly accurate reading of where the radiation beam needs to be aimed.  







In these next two pictures, you can see where the radiation will be aimed.  

In this picture, I zoomed in on the "bolts" that are attached to the mask and lock onto the table that Greg is laying on and will keep his head from moving during his radiation treatments.  

And yes, it is VERY creepy!  










Once we left the radiation oncologist, we had to head over to visit the surgeon.  As you've previously read, we pretty much ruled out esophageal surgery, as it's just too difficult.  Well, the surgeon told us just how difficult it is.  Think of a scale of 1-10 with10 being the most difficult.   A gallbladder would be a two.  Open heart surgery would be a six.  Surgery on the pancreas would be a 7.  Surgery on the esophagus would be a ten!  You'd pretty much hae to be in perfect physical condition to withstand this type of surgery, and we all know that that is not Greg's case.  So, this only cemented the fact that we simply can NOT consider any sort of surgery.  None of our doctors have said otherwise, and are most certainly not pushing us to attempt that option.    

The other reason we needed to see the surgeon -- who by the way is GORGEOUS!  Ha!  Believe it or not, but Greg thought so too, and even called him McDreamy!  LOL!   --  but I digress.  We went to see Dr. McDreamy because he is the one that is going to be placing the feeding tube for Greg.   As previously stated, he needs to have this done prior to actually "needing" it, because by the time he "needs" it, he will be too weak to have the procedure. 

So, tomorrow (April 20, 2017), we are scheduled for Greg to get the feeding tube.  I almost wish he was getting the Hickman Catheter first, because then he wouldn't have to be stabbed to get the IV in!  But, it is what it is.    

After the procedure tomorrow, we have to meet with a dietitian so she can show me what and how to do "feed" Greg.  I ended up in another fight with the insurance  company over that.  The woman that I was speaking to was trying to tell me that it would not be covered.  She kept thinking that we were going for a nutritional consultation, which is only covered for diabetics, etc.  She refused to understand that this was to TEACH ME HOW TO FEED MY HUSBAND WHO HAS ESOPHAGEAL CANCER AND WILL BE UNDERGOING RADIATION AND CHEMOTHERAPY AND NEEDS THE FEEDING TUBE BECAUSE HE WILL BE UNABLE TO EAT AT SOME POINT IN TIME!  

She offered to have Greg's case reviewed by a nurse, but it would still be 24 to 48 hours before a decision was made.   We just learned of the surgery on 04.18.17 at 2 p.m., and the surgery is to take place on 04.20.17.  Forty-eight hours is still too long!  She then told me that there was nothing more she could do.  I absolutely LOST IT at that point.  I told her that I hoped she never had to deal with something like this, and that if she did, she never had to deal with someone like herself, who was absolutely NO HELP AT ALL!  

I then called our case manager and left it all in her hands.  I should have just done that in the first place, but who'd have thought it would be such a huge deal?!  For crying out loud!  If they had just READ what we actually needed, there wouldn't have been such a huge issue!  After advising Jeanne of the problem, she took over (and even had to go to her manager) and got it taken care of and we're covered.  Whew!   

So, that's the latest.  I'll be taking my camera to the hospital tomorrow for more pictures.  I wonder if I'll be able to convince McDreamy to have someone take pictures in the operating room!    Ha!   

If you're interested, and really want to see the gory details, here's a video all about inserting a feeding tube!  

Blessings to all! 

Julie 

PS, our lovely daughter, Erica, has set up a GoFundMe page to help us defray the costs of travel daily for radiation and other healthcare costs.  If you feel compelled to help us out, we certainly appreciate it!   We know that our God is truly an awesome God and He will make sure that everything is taken care of!
Greg's GoFundMe

Consult with the Radiation Oncologist

So, the results from today's visit with the radiation oncologist were pretty good. It's still going to be rough, but it sounds a lot more hopeful than what we were previously led to believe.

They are proposing radiation EVERY DAY for about 6-1/2 weeks, yes, you read that correct EVERY DAY. I had no idea that they were open on weekends, too! On Tuesday, prior to meeting with the surgeon we will go back to the radiation clinic and they will do some more scans and tattoo Greg, so they know where to aim the radiation. They will also make a mesh-type mask for him, that will basically be bolted down, so his head cannot move during his radiation. He is kind of being treated as a head and neck cancer patient, rather than esophageal, and that's because of how high the tumor is. I'm not sure I said exactly where it is before, so, if you know where someone would put a trach in your neck, right in that space where your neck and chest meet, that's where the tumor is located.

Even though we are not going with any type of surgery, we are still seeing the surgeon on Tuesday. I think we mostly will talk about the feeding tube that Greg will most likely need. If he can keep eating and getting enough calories, we won't need to use the tube, but it needs to be there, just in case. As stated previously, the surgery is entirely too dangerous for him. It's at least 7 hours, and more difficult than open heart surgery! We are just not willing to take that chance.

He should be able to drive himself to his treatments, at least unless and until there comes a time when he's just too sick from the treatments. In that case, we are probably going to need some help from friends and family to drive him to his treatments. I still need to be able to work so we can pay our bills, so I don't know that I can take time off to take him every day. But, we'll cross that bridge when we come to it.

I'm still working on the second opinion at Mayo, and am hopeful that that can happen very quickly, as it looks like they want to start the radiation treatments as soon as possible. I really want to hear that what's being planned now is the best treatment option for Greg.

That's it for now. Obviously, we still want and need your prayers and are very grateful for them!

25 Years Since First Cancer Diagnosis

Does that title say it all?  Not quite.  Today (Holy Thursday) marks 25 years since Greg was first diagnosed with Non-Hodgkins Lymphoma.   I'll never forget that day.  I was a young wife of just 26 years old (the same age as our son is now!), with a one year old child (said son).  Greg went in for day surgery to remove a lump near his groin.  A couple hours into surgery, a nurse came out and said that they wanted to make another incision, to see what's in his gut (we had tests previously that all came back inconclusive), so I signed.  A couple hours later, the doctor comes out to tell me my husband of 3 years (and only 35 years old), has cancer.    This was supposed to be day surgery, but he ended up having to stay because of the huge incision in his gut.  I remember having to call his mother to tell her, over the phone, that her son had cancer.  His parents were babysitting Aaron for us.  I was in shock.   I remember calling his boss at Peck Meat Packing to tell him that Greg was not going to be back at work for a while.   

The doctors and I had decided that we would not tell Greg of the diagnosis that day and would wait until the next day when he was more fully awake.  I remember later in the day though, he woke up and said to me "What happened?  It feels like they ripped my gut open!"  I looked at him and simply said "They DID!"   I stayed with him for a while and finally left to go get Aaron.  As I was walking to my minivan in the parking lot, (no, I did not always drive a truck!), I heard someone holler my name.  It was Greg's sister, Jody!  Apparently, Greg's mother had called her and she left work because she didn't want me to be alone.  That was very sweet of her!   I remember being a little numb, as I was certainly not expecting to hear THAT news!  

I always get a little melancholy on this day.  I don't remember the exact date, but I will always remember that it was Holy Thursday.  I'm amazed that it's been 25 years since that horrible day.  I'm amazed that we have our two "miracle babies!"   You see, Greg had to start chemo as quickly as possible, because he was already stage IV.    For those that don't know, chemo can make you sterile and I wasn't done having kids!    We were able to put off the chemo for a very short period of time, so we would be able to freeze some of Greg's sperm so we could try to have at least one more child.  

Greg finished his chemo in September of 1992.  In January of 1993, we had him tested, and there was no way I was going to get pregnant.  There were simply NO swimmers.   We decided to use what we had frozen, and went to see a specialist.  The woman that we went to see kept insisting that I have a bunch of invasive tests done, including a biopsy of my cervix.  I kept telling her that I was FINE.   I already had a child.  There's nothing wrong with me!   We are simply there for her to use what we had frozen to get me pregnant.  She kept insisting.  I finally asked her if my insurance would cover it. She said that it should.  I told her that I checked and it will not cover anything having to do with "achieving a pregnancy."  Her response:  "Well, then we don't need all those tests"!   How HORRIBLE is that?!    This woman wanted to put another woman through INVASIVE tests just to make money!  I was FURIOUS!  We walked out the door, never to return.  I lost 30 pounds and in August, 1993 I got pregnant with Erica without having to use what we had frozen!   Greg's oncologist was AMAZED that I had become pregnant not even a year after Greg had finished chemotherapy and only 8 months after being tested as sterile!!   

We kept the sperm we had frozen until after Erica was born, just to make sure she didn't have any problems because of the chemo.  Back then, it only cost us $100 a year to keep it frozen, so that was a very small price to pay!   Needless to say, we did not need what we had frozen to have Abby, three years later, because Erica was perfect in every way!  Our miracle babies, for sure!   

So, that's the story of Greg's first diagnosis.    Who'd have thought that 8 years after that, once again during the Easter season, that Greg would have a Bone Marrow Transplant, and 17 years after that, again during Easter, that he would be diagnosed with esophageal cancer.   I have to admit, back when I was just 26 years old, I never thought this is how our lives would turn out.  Life is funny that way.  Actually God is funny that way!  OK, so probably not so funny!  BUT, He has been by our side through all of this.  He has never left our side, even if we left His.   After all, how many people can actually say they have survived 25 years after a cancer diagnosis!   

May God bless you all!  

Julie

Met with the Oncologist -- it's going to be rough!

I know that a lot of folks have been waiting for this update, and I apologize, but I was just not in the right frame of mind to be able to do any more than talk to a few people.   There are some that I would have preferred to talk to before posting this, and for that I apologize.  Please don't be offended if I didn't call you before you read this. 

We met with the oncologist yesterday and unfortunately, there was not much good news.   He told us about three options.  First option is surgery.  The doctor does not believe that Greg is a good candidate for surgery.  Because of his congestive heart failure and pacemaker/defibrillator, he is at "significantly high risk for surgical complications," including having a heart attack on the operating table.  In addition, because of where the mass is located, there may not be enough of his esophagus above the tumor to be able to resect it once the tumor is removed.  He needs at least 5mm, and he doesn't think there's enough.  Even with this information, we are meeting with a surgeon on Tuesday.  
Another option is chemotherapy alone.  Chemo alone is not enough to destroy the tumor and destroy the cancer.  Period.  We have already ruled this out.  

Last option is radiation and chemotherapy.   The radiation will reduce the size of the tumor and the chemotherapy will destroy the cancer.  However, there are other risks.  First, because he had total body radiation during his bone marrow transplant, he may have already had enough radiation that his body cannot handle any more.  Greg's radiation records are on their way to the radiation oncologist so he will have that information prior to our appointment on Friday.   Not only that, but the radiation is going to cause enough damage to his esophagus that he will end up with a feeding tube.  That's not a "maybe."  That is 100% guaranteed.   It's not going to be pretty.  

Chemotherapy is also going to be brutal.   Because he has had so much chemotherapy in the past, and his body has been so ravaged by the chemotherapy, he will not be able to start out at the "normal" dose that most other people would receive.  So, he would start that on a tapered dose.  He would receive the chemo 24/7, and the radiation would be every couple of days (if I remember correctly).  This would be a seven week course of treatment.   He will also have another Hickman Catheter implanted because his veins are shot from all the chemo, and because of the way the chemo will be administered.  

Once see the two specialists, they will meet with our oncologist and come up with a plan of action.   

In the meantime, we are looking into getting a second opinion at Mayo Clinic in Rochester, Minnesota.  Our insurance has a nice travel benefit to go to one of their "Centers of Excellence" for second opinions and treatment, so we are going to take advantage of that.  Our Case Manager is doing some research to see who may be the best doctor to see us.  One of the good things about Mayo is that they will have an entire team of specialists to review Greg's records and come up with a treatment plan.    What we are looking for is for them to either tell us that the treatment plan our current team comes up with is the plan that they would recommend.  If Mayo comes up with something different, then we are hoping our oncologist will be receptive to following the protocol that Mayo comes up with.   

So, that's what's going on.  It's going to be brutal.  There's no other way to describe it.  I don't know why the enemy is fighting so hard for us, but we are not giving in.  Our God is amazing and will always be there for us.    We will continue to praise Him and glorify Him.  He will get us through this, of that, I have no doubt!  

Today's the Day!

Well, today's the day.  The day we find out what Greg's treatment options are and here I sit with my limpy limbs -- I had a training session with Ian yesterday, so my arms feel like rubber.  Greg told me to take my limpy limbs to bed!  LOL  So, it's 5 in the morning and I'm unable to sleep.  I was exhausted yesterday because I hardly got any sleep on Sunday because of massive thunderstorms.  My weather radio went off four times!  Here I thought I'd be able to sleep longer, seeing as I didn't have to get up with an alarm, but my body said nope, not happening.  

So many things are running through my head right now, and most of them are not good.  I've mentioned in the past that Easter time scares me because so many bad things have happened at this time of year.  This Thursday, Holy Thursday, marks 25 years since Greg was first diagnosed with cancer.  I'll never forget that day.   I'm not going to rehash it here.  Suffice it to say, I was a terrified young wife, only 25 years old, with a one year old son.   Fast forward to April 12, 2000 (Aaron's 9th birthday, by the way), and we find Greg having a bone marrow transplant.  Tomorrow marks 17 years since his transplant.  The day his brother saved his life.   Since that first diagnosis, we had two miracle babies (chemo usually makes you sterile!), built a house, moved up north, opened and closed our own business, started raising chickens (who'd have thunk it!), and best of all, found new life in Jesus!   

Now, almost 17 years to the day of his transplant, we are heading to the Oncologist office to find out how we are going to battle esophageal cancer.   Greg is back to his usual (cancer fighting) self.  Let's get this going!  Whatever needs to be done, he does, usually with a smile while I'm the one cringing.  It's a little different this time, because my girls are older.  They were too young 17 years ago to really understand how horrific that time in our lives was and how scared I really was.  Now, they are adults, and they are scared.   While they were used to health issues with Greg, that was just his heart.  I know that sounds callous, but when you have congestive heart failure, your family learns how to deal with frequent hospitalizations.  This is different.  I'm not sure how Aaron is feeling about this.  He was 9 when Greg had his transplant.  I know he remembers a lot of what happened.   I just don't know how he's feeling about all this.  To be honest, I'm scared, too.  Who wouldn't be?  We try to be tough and say, well, this is our third time dealing with cancer, we're used to it.  But you know what, we're NOT used to it.  No one EVER "gets used to it."   

So, here I am rambling at 5 a.m., just waiting for time to pass before our appointment at noon.  

Preliminary PET scan report!

Greg had his second endoscopy yesterday at Aspirus in Medford.  They had a problem getting an IV in again (they said he has "tough" skin), and his veins are shot from all the chemo he's had in the past.  He was to have his PET scan today, and would need another IV.  I woke up in the middle of the night thinking . . . why can't they leave the IV in, so he doesn't have to have it done again?  Well, lo and behold, they checked with the providers doing the PET scan (Aspirus Hospital in Wausau), and they said SURE, they could definitely try to use the one from Tuesday, but if it didn't work, they would have to poke him again.   

Fortunately for Greg, it worked and he did not have to be poked again!  YAY!  We certainly were not expecting any results today, but we did get preliminary results!  

They do not believe they saw an swollen lymph nodes or spreading of his cancer!  YAY!  That is the BEST news we could have possibly received!  PRAISE GOD!   

We still do not know what stage his cancer is, but will find that out, along with our plan of attack on Tuesday.   Please continue your prayers for Greg!  Our AWESOME God is listening!    Thank you, everyone!  

What a LONG day!

We are babysitting Erica's dog, Aspen for the weekend, and because he's not here all the time, the boys (dogs) just want to play and play and play and play.  We ended up putting Minnow and Mater downstairs in the office, and had Aspen in our bedroom overnight.  By 4 a.m., Aspen wanted to go out, and Mater was getting stupid and barking to get out of the office.  Greg had his earphones in and music on, so he didn't hear anything. While I wanted to get up and put some overtime in, I wasn't planning on starting until 5:30 or so.  Because of the dogs, I ended up starting to work at 4:15 a.m.!   It's now 7:30, and I'm pooped! 

Once I was done working at 10:00 a.m., I spent the rest of the day cleaning and cooking.  Rachel's mom (Rachel is Aaron's fiancé) and some other folks are coming over tomorrow, as we have "stuff" to do.  Obviously, I had to get some cleaning done!   I spring cleaned the small bathroom, cleaned the kitchen, washed the floor, went to the grocery store, and made some munchies for tomorrow!  

I made a low carb cream cheese dip with dry Ranch dressing, green onions, cream cheese, sour cream, bacon and cheddar cheese.  This one will be eaten with cucumber slices, to keep it low carb.  Then I made a Reuben Dip, which is just what it sounds like!  Diced corned beef, cream cheese, sauerkraut, thousand island dressing and Swiss cheese.  That is a hot dip, so it's in my little crockpot.  I also made some Salsa wraps with cream cheese, salsa, Mexican shredded cheese and minced onion.  I mixed all that together and spread it on burrito size tortillas and then rolled them and sliced them.  The last one I made is my famous spinach dip!   I basically use the recipe on the package of Knorr Vegetable Soup Mix, but tweak it a bit.   It's amazing!  

I was listening to my Christian Music Favorites on Spotify while I was working, and I must say, with everything that's going on right now, too many of them really made me emotional.   The other day at work, I was listening to the same music in my headphones, and I just sat there with tears pouring down my face as I listened.   Fortunately, no one saw me!   I don't think I've had enough time to process what's happening with Greg. I'd been so involved in the battle with the insurance company, that I wasn't letting the reality of everything set in.  I don't know that I'm even at that point yet.   I'm pretty sure I won't be at that point until after we see the oncologist on April 11th. 

One of my favorite new songs is by the Sidewalk Prophets.  I saw them in concert about 4 years ago with Matthew West.  It was incredible!    The song is called IMPOSSIBLE.   Here are the lyrics. Once you read them, you will understand why this song is resonating with me right now.   

They tell me that I can't
Tell me that I won't
Tell me that I'm washed up
Tell me that I'm broke
They tell me that I don't
Don't have what it takes
Tell me that I'm crazy
Hanging on by faith
Tell me I'm a lost cause
I'm a hopeless soul
Just stand back watch my God do

The impossible, the impossible
Everything is possible
With him everything is possible, is possible
Everything is possible
Everything is possible

Precious God you bring life from death
With your word all of time began
Is possible, the impossible
Everything is possible
Watch our God do the impossible

Some would say it's foolish
Stepping on the ways
Some would say it's over
When you're buried in the grave
We're calling all the dreamers
With passion in their eyes
Calling all believers out into the light
Even when it's hopeless
Out of our control
Just let go, watch our God do

The impossible, the impossible
Everything is possible
With him everything is possible, is possible
Everything is possible
Everything is possible

Precious God you bring life from death
With your word all of time began
Is possible, the impossible
Everything is possible
Watch our God do the impossible

When our God speaks
The mountains roar
The whole earth trembles with the throne
Though this life can be
His glorious break enlights the sun
When our hope is lost
When our strength is gone
He is rising up
We will overcome

The impossible, the impossible
Everything is possible
With him everything is possible, is possible
Everything is possible
Everything is possible

Precious God you bring life from death
With your word all of time began
Is possible, the impossible
Everything is possible
Watch our God do the impossible

When our hope is lost
When our strength is gone
He is rising up
We will overcome

Here's their official video.  I hope it moves you the way it moves me. 

We serve an amazing God.  I know that what appears impossible to us is entirely possible with God.  My Lord and Savior Jesus Christ is on the throne and will carry us through everything!   There is nothing the enemy can do that will stop us from praising God!