More Tests and Surgery in Greg's Future!

It seems to never end for Greg.  As usual, if it's not one thing, it's another.  We are now at the point of one thing AND another!   A few weeks ago, I went with Greg to see an immunologist.  He's had so many sinus infections, even after his sinus surgery that there has to be something going on.  He's had a compromised immune system ever since his bone marrow transplant (on April 12, 2000 -- 18 years ago!), which is completely normal.  His immune system was destroyed by the high dose chemotherapy and total body radiation he had back then.  That is what they have to do in order to give you a *new* immune system from your donor.  In Greg's case, that was his brother, Tommy.  A perfect match!  

So, because he kept getting sinus infections, even after the sinus surgery, we decided to visit the Immunologist to try and figure out if there was something going on with his immune system.  He had blood work done and eight vials were taken.  Some of the tests were specialized enough that they had to be sent to Utah!   

The immunologist advised that two out of the three things they look at with regard to his immune system were low (sorry, I can't remember what they were).  And not just a little low, or near normal, but kind of low, but VERY low.   The first thing he wanted to do was give Greg a pneumococcal pneumonia vaccine, because he's never had one.  He did have a pneumonia vaccine a while back, but never the pneumococcal vaccine.  

The doc said that that can potentially help with the sinus issues and chest congestion, etc.  In about five weeks, Greg will have more blood tests done, and, assuming the results are the same, he may be a candidate for what's called IVIG treatment.  Basically, it is an intravenous treatment that delivers immunoglobulin (found in plasma) donated from healthy people to Greg to boost his immune system.  It can take as many as 1,000 individual plasma donations to treat one patient for a year! (Holy crap!)   Treatment is generally every 3-4 weeks and is usually VERY expensive.  Nearest estimates I can find are anywhere from $5,000 to $30,000 per treatment!  I'm not sure how long a person needs to continue treatment, but that is something we will find out if this is what is recommended for Greg.  

Next, we saw the oncologist to get the results of the CT scan and Nuclear CT Scan that Greg had on Wednesday.  The scans were of his parathyroid glands.  There are four glands behind the thyroid -- they have nothing to do with the thyroid though.  Those glands are located in the neck and control the body's calcium levels.  They are about the size of a grain of rice.   When a person has hyperparathyroidism, one (or more) of the parathyroid glands is basically an overachiever.  They produce too much calcium.  The other glands should compensate by producing less calcium, but with hyperparathyroidism, the other glands continue to produce calcium, so the body has too much calcium. 

Some of the symptoms of hyperparathyroidism that are currently affecting Greg are:  

• Excessive urination
• Tiring easily or weakness
• Depression or forgetfulness
• Bone and joint pain
• Frequent complaints of illness with no apparent cause

The "cure" for this is to simply remove the overachieving parathyroid glands.  So, Greg will be having yet another surgery to have the two parathyroid glands on the left side removed.  Most patients report almost immediate results from the surgery, even going so far as to report feeling better while in recovery!  This could be a huge game changer for Greg and explains so many things that he is currently dealing with!   

So, that is what happened today.  I apologize for not getting this out sooner, but seeing as we were in town, we had to do some shopping, and then had to make dinner, etc.  

As far as other issues, Greg is now about three weeks sober and things are going well.  It's not been easy, but it's a lot harder when he's drinking.  So, all is well.  Prayers that he is able to continue with his sobriety are certainly appreciated!  

As always, I'll keep you updated on all the going's ons here at the Mik Homestead!    

Blessings to all! 

Julie

Vacation? What vacation?

I've been on vacation all week, but unlike most normal people, MY vacation was spent doing yard work!    Doesn't that sound like fun?!  NOT!    We have a LOT of yard -- 2-1/4 acres worth of yard!  AND, lucky us, almost all of that consists of grass we have to cut!  WHAT were we thinking when we bought this house 13 years ago?!  I can tell you with utmost certainty that it was NOT about how old we were going to get and how much work it was going to take, especially if one of us has the nerve to go and get cancer (again!) and I'm stuck doing all the yard work!   You can bet your sweet bippy that that is not something that ever crossed our minds!  (Of  course, this is all said tongue-in-cheek, so just chill out, k?)  

That being said, I've been working my butt off every day of this so-called vacation.   First thing was to spend Sunday with my dear neighbor, Jessica, mucking out the chicken coop!  I'm pretty sure this was hands-down, the nastiest job that needed to be done!  Abby had cleaned some of it out, but there was a LOT left, and when I say a LOT, I mean a BUTTLOAD!  We use the "deep liter" method in the winter, which means the coop does not get mucked out, and we just keep adding sawdust, so the resulting composting chicken poo helps to keep the coop warmer in the winter.    It was probably about 1-1/2 feet deep, and in an 8x16 foot coop, that's a LOT of poo and sawdust!  So, now that the coop is cleaned out, we've been letting the floorboards dry and will be putting in fresh sawdust.  We're also going to be making a new roost and nest boxes for them.  Hopefully, that will get done in the next couple days. 

To give you an idea of the amount of poo we had to shovel out, all the "brown" in this picture in the front and on the side of the coop used to be IN the coop!  We spread it out there because the chickens love to scratch around in it for bugs and stuff!   That tire is there for me to get some cardio and strength training done.  All I need is a sledgehammer!  If you have an extra, or know of someone who does, I would certainly appreciate hearing about it!  

I spent the rest of my days planting flowers and using my incredibly awesome walk-behind trimmer to trim all around the yard.  It's my hope that now that it's under control, it won't take anywhere near as long to get it all done.  I also cut the grass in the  front yard, around the U-shaped driveway, and the entire area to the west of the barn, and all around the chicken coop.  I then power-washed the deck stairs and of course, power washed the goose ponds. While I was trimming on the west side of the barn, I decided that the trees needed to be cleared out.   Our friend, Aaron Knight was over to help out and he used the push mower to clear out most of the ditch.  The grass and weeds were more than two feet tall, so it was a LOT of work.  The grass and weeds around the trees were the same height, and it was driving me nuts!   I didn't think to take "before" pictures, so you're stuck with just the "after" pic.  If you look at the grass behind the trees, that's what the ditch was like and that's what was 2 feet in front of the trees and all in between them!!!!   

That patch toward the left of the picture is actually some wildflowers (that is pretty much how tall all the grass and weeds were!).   When you get up close, they are beautiful yellow flowers that I just didn't have the heart to cut down.  

In the picture above, you can see how the ditch is cut down.  I wish I had a "before" picture!  
Today, I only had left to trim the back and side yards, which includes in our little forest area, and then cut the rest of the back yard.  It took about an hour to trim the back yard, and then I started on the side.  I trimmed on the house side, and then went to work tackling the "forest" area.   It wouldn't be so bad, but we have an astronomical amount of burdock.  Burdock is Wisconsin's answer to Velcro, only it clings to EVERYTHING, not just the other half of Velcro!  LOL     While this may not sound like a lot, it really truly is!   

Here's the "before" and "after" pictures of our little wooded area on the north east side of our home. 

A lot of the "weeds" here, aside from the burdock is creeping charlie.  The creeping charlie is slowly starting to take over.  I definitely not mind if the creeping charlie took over completely.  I'd take that over the gigantic burdock any day!  

While I was trimming in the woods,  I wasn't really paying attention to the time, as I kind of get "in the zone" when I'm trimming.  Just concentrating on what I was doing, mostly because that sucker is dangerous!  I always wear my work boots, but I still have on shorts and a tank top.  Of course, I wear safety glasses.  This is the only piece of yard equipment that I use safety glasses with and insist everyone else that uses it wear safety glasses.  In fact, if I  could find a full face mask for lawn equipment, I think I'd buy one!  This sucker shoots out more crap than you can believe!   Suffice it to say that you really need to keep your mouth closed when using it!  

Here's some other general pictures of the yard.  Many of them are before I trimmed.  

This one is looking west, from our driveway.

This is the front of the house.  I need to trim the bushes, but I can't do that until fall.  

Rufus likes to play King of the Hill! 

The GORGEOUS Fuchsia I bought at Valentine Greenhouse.  Absolutely the most gorgeous and stunning fuchsia I've EVER seen!  The flowers are just STUNNING!!  

Back to my trimming . . . So, I was trimming along, and about half done, when I somehow manage to hear what sounds like a lawnmower behind me.  What the? . . .  I turn around, and there's GREG RIDING TOWARD ME!     He wasn't exactly a knight in shining armor, and not quite a prince riding to save his princess on his beautiful white horse, but you know what? He doesn't need a white horse or even a nice shiny new zero turn mower (I wish!). He's MY prince!  

I'm going to end this right here, because this is awesome way to end the evening!  Blessings to everyone!  

Julie

 Greg's Go Fund Me

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!  

Endoscopy Results were NOT what we wanted.

So, I have been putting off this post for a couple days until we knew for certain, and today was the day.  Greg had to have the endoscopy because he was having problems swallowing.  As it turns out, the reason he is having trouble swallowing is because he has a mass in his esophagus.  On Friday, the doctor told us that he would be "surprised if it wasn't cancer."    He took biopsies and sent them to the pathologist.

Today, we got the results.   Based on the sections that were examined, he has esophageal cancer.  We don't know what stage yet or any other information.  That's because the mass is rather high in his esophagus, which makes it hard to get to with the traditional endoscope.  

Because we also don't know if it has metastasized (spread), he needs to have what is called a PET scan.   Cancer cells show up as bright spots on PET scans because they have a higher metabolic rate than do normal cells, so it's the best test to use to see if the cancer has spread.   PET Scan Info  Greg is scheduled to have the PET scan this Friday, March 31, 2017.   

The other test he needs to have done is similar to an endoscopy, but they will go through his nose, instead of throat.  That way, they will have a clearer view of the tumor and be better able to take more biopsies.  He's going to have that done on April 4th. 

We have an appointment with the oncologist for April 11th.  One day before the 17th anniversary of his Bone Marrow Transplant!  When we see the oncologist, he will have the results from the tests, and will discuss with us a plan of action.  Once we have that done, I will be in a much better place than I am right now.  I HATE not knowing!  Once we know what stage he's in and what we have to do to combat it, I will feel better and more confident. We've been through this before.  We can do it again.   

A little more background on this cancer.  Seventeen years ago, Greg had a bone marrow transplant for Non-Hodgkins Lymphoma (you can read all about it here:  Greg's Blog Starting in January, 2000 )  As part of his transplant, he had to have Total Body Irradiation (TBI).   Not only that, but about two years after his transplant (in 2002), he was diagnosed with something called Barretts Esophagus.  Unfortunately, between the TBI and Barretts Esophagus, he had little chance to avoid this diagnosis.  

Greg was originally diagnosed with Non-Hodgkins Lymphoma on Holy Thursday in 1992.  Aaron was just a year old at the time, and of course, neither of the girls were born yet.  After the chemo he went through, they are my miracle babies!   Greg was in remission for six years, and we found out his cancer had returned in November, 1998.  He went through two years of chemo, trying to destroy the cancer, which didn't work.  Our only option at that point was a Bone Marrow Transplant.   Greg's brother, Tom, was a perfect match for him.  The link goes to Tom's harvest page on Greg's blog.  

So, that's where we're at right now.  Your prayers will, of course, be appreciated.