Chemotherapy and Radiation Begin!

So, it has taken me a couple days to get to this post.  I needed some time to think about it, and some time to just gather my thoughts.  We spent all day Monday at the hospital.  And by all day, I mean from 7 a.m. to 4:30 p.m.  So seriously, ALL FREAKIN' DAY.  

The day started out  with Greg getting his PICC line.  I posted a video a couple days ago about how this is done, so I won't post it again.   Once Greg was taken into the operating room, it took about a half hour for the procedure to be done.   Greg was worried about any pain he might feel, because it HAS to hurt having that long tube traveling through your body, but when he came back, he said he couldn't feel a thing!  He was VERY happy!  

So, here's a picture of the PICC line:  

He only has one "lumen" and from that they can withdraw blood or give him meds.  This is awesome, because that means NO MORE POKES!   YAY!!!!!






Next was an appointment with the oncologist, but that wasn't until 10:45 a.m., so we had a lot of time to spare.    We decided to go out for breakfast, seeing as neither of us had eaten, and we didn't know if we would have time for lunch, breakfast seemed like a good idea!  We went to a place near where I work (OK, the building I used to work in), called the Blue Willow Cafe and were pleasantly surprised to find the parking lot FULL!  That's always a good sign!   After we sat down we saw lots of plaques on the wall that they were voted "Best Breakfast" in the area!  Ended up being a great choice!  Two eggs, hash browns with onions in them and whole wheat toast for $4.99!   Greg had the same thing, so a good breakfast at a sit down restaurant cost us less than McDonald's!  BOOM!  

So, after getting back to the Cancer Center and meeting with the Oncologist, it was time to start his first chemo.   Because it's so hard on the kidneys, they first have to hydrate you, and that takes an hour for the entire bag to drip.  Next came the various drugs that entail the chemo cocktail.   Greg had to use the restroom, and while in there, he decided to take some pictures!  LOL   

Of course, I got a couple too!  

I really don't like how pictures post on Blogger!  ACK!  

To make a hectic day even more hectic, I had a doctor's appointment at 2:45 p.m. to review my meds.  I figured it would work OK as my doctor is on the same campus as the Cancer Center.   By the time I got back, Greg was already gone to his first radiation treatment.  

The "leads" that you see on his chest are for his pacemaker.  Apparently, they measure the amount of radiation his pacemaker is getting.   Because of the leads and pacemaker, he had to get more tattoos!  He's now got 3 or 4 purple dots on his chest so they can line everything up properly.  









After the radiation, Greg got hooked up to his 5FU, which is the chemo that he will have 24/7 over the course of five days.   He was given a portable infusion pump  that has the chemo meds in it and has a couple of different "bags" to keep the infusion pump in, so he can move around, etc.  The infusion pump looks like this: 

The clear/smokey area at the bottom is where the medicine is kept.  We also have an "emergency chemo bio-wipe bag," in case there would be a spill.  According to the nurse, that has never happened, so we're not too concerned!    The 5FU chemo will pump continuously until Friday, at which time the nurses will remove it and he'll be free for 28 days!  




We finally left the hospital at 4:30 Monday afternoon.   It was a completely exhausting day, for both Greg and me.  We came home, ate dinner, and both of us went to bed!   

Unfortunately, Greg wasn't able to sleep very well.  Between the chemos and the steroids that everyone who gets chemo is put on, he was wide awake after just a couple hours.    It's going to take him some time to get used to everything.   In addition, the steroids make him CRANKY!   

If anyone's wondering about me, well, working at home is going well and I'm very happy to be at home.  It's kind of odd, because I don't even need an alarm clock!   I have one set, just in case though.  It is pretty awesome to be able to walk down two flights of stairs and start working!   So, I guess I'm doing OK.  It could be better, and it could be worse.    

Just for fun, here's a picture of Greg with all the "stuff" hanging on him!  I now call him "Lumpy Greg!!" 

With that, I'm going to end this post.   It's time for me to relax.  Night all!  

Blessings! 

Julie 

Greg's Go Fund Me

Chemo will begin soon!

We got a call from the Cancer Center to advise us of Greg's chemo schedule.  On Monday, May 1, 2017, he will have to go in and get his PICC line installed (he will not be getting a Hickman, as we previously thought).  This will be a full day at the hospital.  I'm not sure of the order of all of this, but here's what we will be doing.  We will meet with the Oncologist to go over Greg's treatment plan.  We will also meet with the Radiation Oncologist.  Greg will have his first radiation treatment and then will have his first chemo treatment.   

Radiation will be Monday through Friday (every day) for 6-1/2 to 7 weeks.  The radiation itself is only about five minutes, and the whole appointment will be rather short.  Greg will be driving himself unless and until such time comes as he's not feeling well enough to drive.  If that appears to be on the horizon, we will be sure to let everyone know so we can get some volunteers to help take him, as we simply can't afford to have me take off work that much to take him.  We are praying that never happens!   

Greg will also have his first chemotherapy treatment on May 1.  He will receive a drug called Cisplatin, which is one he had the first two times he had cancer.   It takes 2-3 hours to administer the Cisplatin, so we will have some downtime while the poison is being pumped into his veins.  I would apologize for calling it poison, but I'm not going to, because that is exactly what it is.    

Once he's done with the Cisplatin, they will set him up with a pump, so he can receive a drug called 5FU on a continuous infusion for five days.   When he goes in for radiation on Friday, they will remove the 5FU pump. 

Greg will have the Cisplatin and 5FU approximately every four weeks, so he will have two courses of chemo during his radiation treatments and two courses of chemo after his radiation treatments.  Based on this schedule, he should be all done with all treatment by the beginning of August.   If that is the case, I'm hoping and praying that he will be feeling better (at least normal?) by the time of our son, Aaron's wedding in October.   

Because I have the kind of job that United HealthCare allows telecommuters, I will start telecommuting tomorrow!  I'm SO excited to be able to do this, and cannot thank my supervisor and manager enough for all their support!   In order to work at home full time, I need to have a separate room for me to work.   If you know what our house is like, then you know that we have an abundance of bedrooms to choose from!  Ha!   I chose Aaron's old room, as the heat works well in the winter, and it's always cooler in the summer, because it's in the lower level (we have a tri-level house).

In order to make that my office, I needed a desk!  We went to EVERY STORE IN MARSHFIELD that sells furniture looking for a desk for me!  I was amazed at what little choices we had, and quite disappointed!  I did NOT want a cheap "Sauder" desk.   We finally found a halfway decent desk at Walmart, and yes, it is a "Sauder" desk.  😒   Not exactly what I wanted, but it is what it is.   In order to get the desk put together, we had to move the bed out of Aaron's room.  Jessica and I did that, and then needed Abby's help to move it up to Erica's old room.  We bought that bed when we moved to Sturtevant, in 1998.  We moved up here and it went into Aaron's room.  Aaron got a new bed and this one went upstairs to Erica's room.  Erica got a new bed, so it went back downstairs to Aaron's room (he was not living at home any longer).  And now, because Aaron's room is my new office, it has gone back up to Erica's room!  That bed has gone up and down more than Seattle Slew!  😆   And, it's HEAVY!  It doesn't use a box spring, as the mattress sits directly on the bed, with three drawers underneath.  











Jessica and I (OK, mostly Jessica -- my dear friend and neighbor) put the desk together.  

 There were 18 steps to put it together!  YIKES!  Jessica did most of it, and I was just there for moral support and to hand her the pieces.  We worked together very well, and only had to take apart one piece that we had put together wrong!  I think that was pretty darned good!   Abby came to help again, and put together my "cube" that you'll see in pictures below.  

I'm SO happy with how my office turned out!   Tomorrow is going to be a GREAT day at work!  I can wake up at 6:30 and be at work by 7:00!  No worries about hair, make-up, clothing, etc!  And yes, I will begin each day at work in my jammies!   How cool is that?!   

Here's my new office:  

I am so blessed to be able to work from home and to have this beautiful office to work in!  We serve such an amazing God who is always good, all the time!   We continue to praise Him as He guides us through this latest trial.  We will get through this, with His help and grace.

Blessings to all!

Julie 

Greg's GoFundMe  

Installation of the Feeding Tube

Not sure if that's the right thing to call it, but what else would you call it?   He had surgery and they put in a feeding tube.  They used the method shown in the video from yesterday's post if you want all the gory details.  






We got to the hospital at about 9:45 this morning.  Thanks to a suggestion from my dear friend, Wendy, we asked the nurse to have the anesthesiologist put in Greg's IV line.  If you will recall, in recent weeks, he has had notoriously bad luck with having IVs put in because his veins are shot from all the chemo he's had over the years.  The anesthesiologist did a GREAT job and it took only one poke.  Greg said he didn't even feel it!  That made me very happy!   Thank you, Wendy!  Until Greg gets his Hickman installed, we will only ever allow an anesthesiologist to put in an IV again!   






OK, so a couple weeks ago, my brother had open heart surgery.  He's doing well, but had some fluid in his lungs that needed to be removed and he was having that done today.  I thought that was something that was going to be done in the doctor's office, but I guess not!  As we were sitting in Greg's room in the surgical area, I heard my maiden name, and then my brother's voice!  I walked out and saw my brother was in the room almost across the hall from us!   Was certainly not expecting that!  It was nice to be able to see him and his wife.  We didn't really get to chat, because they had to take him to the procedure room to get that fluid off is lungs.  I understand he's doing well now!   




Greg was taken back to the OR around 11:15 and was back by noon!  Dr. McDreamy said that everything went well with the tube.  Unfortunately, Greg was in a LOT of pain.  Now, Greg can handle pain.  He's in pain daily.  I've never seen him complain or fuss the way he was this time.  The nurse called Dr. McDreamy, and he said he wasn't surprised because the way they had to position Greg, he probably didn't get the full effect of the local anesthetic.   Poor Greg!   He was able to get quite a bit of morphine while we were in the hospital and that helped, but not as much as one would hope.  He's pretty sleepy here. 

We didn't leave until about 1:30 p.m., and had to wait for the nurses to show me how to flush the tube, because it's not going to be used for a while (hopefully!), we don't want it to clog up, so I will have to flush it every day.   

When the time comes that we will need to use the feeding tube, we will meet with the dietitian again and have some home health care set up, along with getting the "food" ordered for him.  I'm not sure what the insurance is going to cover for all this, and I know that Medicare will not cover it because it's not permanent.  Whatever it is, it is.  I'm not going to worry about it.  God will provide.  

In case you're wondering, here's a picture of the tube.  I'm guessing that you'd be surprised if I didn't post a picture of it!  HA!      

Eventually, the gauze underneath it will not be needed, but obviously, we need it for now.  The other end of the tube actually has closures on it just like a blow-up mattress!  That made me giggle.    

We'd certainly appreciate your prayers that Greg's pain ends quickly!  I really HATE to see him in so much pain!   

Blessings to all, 

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!