28 years ago tomorrow -- Greg's first cancer diagnosis!

I don't know how much I've talked about when Greg was first diagnosed with cancer in this blog, but the 28th anniversary of that is tomorrow, Holy Thursday.  The only reason I remember the date is because it was Holy Thursday.  I'm sure I could go look up what day Holy Thursday was in 1992, but why bother.  It's not that important.   What's important is that it was 28 years ago when Greg had his first cancer diagnosis and I remember that day like it was yesterday. 

Greg was scheduled for day surgery at a hospital across from the Zoo in Milwaukee.  I don't recall the name of the hospital, but it's not there any more.  His parents were babysitting Aaron, who was just a year old and we had just had his first birthday party the week before.  The surgery was for a lump near his groin.  The doctors weren't sure what it was.   In the previous year, they had found "something" in his gut area, but all the tests came back inconclusive, so they were just "watching and waiting" to see if anything developed.  When he found the lump near his groin, they decided that they needed to operate to find out what it was. 

It didn't seem to be a big deal, so I was alone at the hospital.  I was all of 26 years old and Greg was 35.  After what seemed like an inordinate amount of time, I went up to the nurse's desk and asked what was taking so long.  They said they would check with the operating room staff and let me know.  Next thing I know, a nurse is coming out in scrubs, telling me that they would like permission to cut Greg's gut open, because they think they know what might be going on, but they need permission.  So, I signed the form.  

A while later, I don't remember how long, the doctor came out to sit and talk to me.  He told me that Greg had cancer.  He was not comfortable telling me this, and I remember feeling like this is not the kind of thing he is used to telling people!  I asked some questions, and felt like I was doing OK, until they handed me a box of Kleenix!  That's when I lost it.   He said when they took out the lump near his groin, they realized it was lymphoma, and wanted to take a look at his gut.  He said it was riddled with cancer, and there was nothing they could actually remove, because there are too many lymph nodes that are in that part of the body and were diseased.  They checked all his other organs and put everything back where it belonged and stitched him back up.

I remember calling Greg's mom and telling her that her oldest son had cancer, and that I wasn't sure what time I would be picking up Aaron, because we had to get Greg settled in a room. 

The doctor and I agreed that we would wait until tomorrow to tell Greg that he had cancer.  At one point, Greg did say to me "what happened, it feels like they ripped my stomach open!"  I looked at him and said "They DID!"  Ha, ha!    

I remember, after getting Greg situated in his room, that it was time for me to leave.   As I was walking to my van in the parking lot, I heard someone calling my name.  Confused, I turned to look, and there was Greg's sister, Jody!  She told me that their mom had called her at work to tell her about Greg's cancer, and she left work, telling her boss that her brother was just diagnosed with cancer and her sister-in-law shouldn't be all alone at a time like this!  That was probably the nicest thing anyone has ever done for me before or since!  I was pretty much in shock, and trying to figure out how I was going to work the next day, and do everything that needed to be done with a one year old baby, all by myself, when I had just been told that my husband had cancer.  Jody and I went into the hospital and she visited with Greg for a bit, and then we left so he could get some sleep.

The internet hadn't been invented by Al Gore yet, so there was no going home and doing research.  There was just going home and taking care of my baby boy. 

I remember telling my boss that I would not be at work the next day, but having to stop in the office to pick up my shoes for Easter Sunday service!  I always wore tennis shoes to work, and kept all my "heels" at my desk, so I didn't have any shoes at home to wear to church on Sunday!  LOL 

I then went to the hospital and the doctor and I sat with Greg and told him he had cancer.  Specifically, he had Non-Hodgkins Lymphoma and needed to start chemotherapy within a week.   We had a lot of decisions to make at that point, as we discovered that chemo could make you sterile, and I wasn't done having babies!   (Spoiler Alert:  We had two more babies!  Ha, ha!)   We ended up freezing as much sperm as we could before chemo started (that's a whole 'nother story in and of itself that I won't go into here). 

So many memories.  So many feelings.  This time of year always pulls me in a direction I don't like to go.  We've had so many crisis issues during the Easter season.  I'm always somewhat fearful of this time of year and am always grateful for Easter Sunday for so many reasons.   With Greg's current health situation and the Corona Virus, it's been more stressful this year than ever before.  

But, Sunday, April 12, 2020 is not only Easter Sunday, it is also Aaron's 29th birthday, AND the 20th Anniversary of Greg's Bone Marrow Transplant!  Be on the lookout for more memories on Easter Sunday!  We have been through a lot, but we are well and truly blessed!

Love to all!  

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