Showing posts with label 25 year cancer survivor. Show all posts
Showing posts with label 25 year cancer survivor. Show all posts

Monday, July 3, 2017

Not Sure How Much More I Can Handle

I'm really not sure how much more of this I can deal with.  I work all day, and then I spend the rest of the day/evening doing yard work and other stuff that needs to be done around here.   I'm exhausted.  My tendinitis is killing me, and I wake up crying out in pain almost every night.  My entire body hurts when I wake up in the morning.   

Greg does as much as he can, but lately, even riding the lawnmower is causing his feeding tube to bleed and leak icky fluids.  He has the memory of a gnat, and that makes me crazy, too.  I will ask him for something, and he'll go outside to do something else, and when I go out to find out what he's doing, he looks at me like "what do you want," completely forgetting what I just asked him to get/do.  It's not something he can help, it's called "chemo brain."  That's not a joke.  It's a real thing!   Just about every person going through chemo will joke about having "chemo brain" but like I said, it's a real thing. Chemo really affects your short term memory.  It's not something he can help, and I can't help it if it drives me nuts, and then I get mad at him, and then I get mad at myself.  It's horrible.  

Today, he managed to knock into one of my shepherd's crook plant hangers and not only knocked the plant off, but broke the pot and the hanger.  This is the second time that's happened.  I'm human.  I got mad.  It's not like he did it on purpose, but I still got mad.  It was just more work for me to do to fix it (and it was one of my best growing plants!).  What can I say.  Ya, I'm just mean.   How many of you have been married to or lived with someone fighting cancer?  I'm guessing there's quite a few.  Now, how many of you have been married to or lived with someone fighting cancer two or three times?  How about adding congestive heart failure to the mix?  How well would you handle it?  Greg seems to have the super power ability to beat cancer and he makes it difficult for me to remember that he's sick, so when things go wrong, well, they go wrong in more ways than one.  

I can't tell you how many people have said "let me know if I can help" and when I do ask for help, there's no one there.   I'm not in a good mood right now, so I'm just going to come out and say this:  If you're offering to help someone just to make yourself feel good, and have no intentions of actually helping, don't bother offering in the first place.  This is not just about me, it's about everyone that is struggling and needs some help.  Hollow offers of help are just that, hollow.  If you really want to help, don't offer, just go over and DO something.  If you're offering to help, you must know the person/family fairly well.  You should know what they might need help with.  There is always something that needs to be done in any household. 

When Greg had his transplant, I remember coming home from the hospital one day to find the grass had been cut.  It brought me to tears.  Seriously, I stood in front of my house crying.   I found out it was my 80 year old neighbors that cut it!  They saw a need and took care of it.  They didn't offer, they didn't ask, they just DID.   My kids' babysitter would oftentimes send me home with a casserole when I went to pick up the kids.  That way, I didn't have to worry about making dinner after a long day at work and at the hospital.  Other folks did other things.   My sister came over and did 10 loads of laundry for me!  Again, none of these were asked.  It was just people who saw a need and took care of it.   

If you see yourself in this and are starting to feel guilty, well then I guess this blog entry did it's job.  Now, I'm going to go shower and wash off all this grass and dirt and grime from all the yard work I did after I got done working all day.  

Take care, 

Julie 


Thursday, June 8, 2017

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




Thursday, April 20, 2017

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











Friday, April 14, 2017

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!

Thursday, April 13, 2017

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