It has begun. Greg can no longer eat. After three weeks of radiation, his throat is just too sore and it's too hard to swallow. They told us this was going to happen, but you never think it's really going to happen to you. He's been doing so well these last three weeks, I think we really thought he would continue to beat the odds and be able to eat throughout his treatment. This makes me so sad. One thing I love to do is cook. I'm an awesome cook, if I do say so myself! BUT, anyone who eats here will certainly agree with me! It's how I show love to my family and friends. I like nothing more than having my family tell me dinner was good! And now we're down to this for Greg.
That Osmolite 1.5 is what will be his "food" for the foreseeable future. I don't even know how I can cook anything and enjoy eating it knowing he can smell it and want to eat it, but just can't. That's is going to REALLY suck. At least when he had his transplant (bone marrow), during the week or so that he couldn't eat, he was too sick to want to eat, and he wasn't at home smelling everything I was cooking. Not so this time. How could that NOT suck? I try so hard to not complain and to be there for him, but I have to say, this time it's really affecting me, and I feel like a jerk for feeling bad because he can't eat my food. I mean, seriously. HE CAN'T FRIGGIN' EAT, and I'm whining about how it feels to me to not be able to cook for him. How pathetic is that? Really makes me feel like crap. I will never, even if I live to be 150 years old, come close to being as amazing as my husband is. Yes, he makes me crazy at times, and we've had our really bad moments, but oh my. I cannot believe his attitude when it comes to dealing with cancer. This is the THIRD time he's had cancer, and every time he totally amazes me! I guess that's our Lord in action, and I guess that I just need a smack upside the head by Him. Or, maybe this cancer WAS my smack upside my head -- to get me to appreciate the husband God gave me? I just don't know anymore. I. Just. Don't. Know.
I'm in a bad place right now, and it's not just this. I don't know where to turn anymore. I know who is there for us and who is not. I know it's not very Christian, and I can't help it, but I will certainly remember who was there for us and who was not. It's amazing how many people are too afraid to actually follow-through with their promises. So, that's it. You know who you are. And if you see yourself here, maybe you should look at your heart. One day, things are not going to be all rosy for you and you will reap what you sow. The only difference is that I will still be there for you, even though you were not there for me.
Blessings to all,
Julie
If you feel led to assist financially: Greg's GoFundMe
We were really hoping it wouldn't come to this. Greg has always been so strong when it comes to cancer treatments. He totally amazes me! It's been getting harder and harder to eat. He's had three weeks of radiation so far (15 days total), and it simply hurts to You know what it's like when you have strep, or some other kind of bad sore throat and you don't want to eat? Well, multiply that by 100 and you may have just the slightest glimpse of how Greg's throat feels.
He posted this on Facebook today:
How bout an update from Mik Mission Control and progress @ the 1/3 marker of "Flight of the Phoenix" I just named that!!.........Stage 2 of 3 and where we are at!!..........We reached the decision to go with Straight Tube Feeding, or STF as I just decided to call it......Due to daily radiation treatments, I can no longer swallow nor desire to, knowing that I can't.........So for those who want to be in the know, there ya have it!!............Everything now goes down the Tube.........What fun can I have with this???..........One last note..........My last meal was Pizza......My first meal back will be Pizza!!........Thank you all so much for all your Prayers, Thoughts and Wishes.....These I share with others in need...........Circle of Hands......
So, there you go. That's the amazing attitude he has! I can't wait until the day I can post that he's eating pizza again!
We're working with the durable medical equipment company and the insurance company now to get the proper authorizations for the enteral feedings. Hopefully, that will go smoothly! If not, we have our awesome Nurse Case Manager who will work her magic to make sure that everything is taken care of.
It's now been three weeks since I started telecommuting and I must say, I really DO love working from home! I was able to switch my shift to 6 a.m. to 2:30 p.m. and it's really incredible to be done working at 2:30! I need to work on my scheduling though, as I still tend to take my lunch at noon, and then, suddenly, there's only two hours left in my day! It's just going to take some getting used to. I now set my alarm, just to make sure I wake up in time, and I'm still usually awake right around the time my alarm goes off at 5:30. Working from home has really been the best choice I could have made! I'm pretty sure that Greg is not going to be able to drive himself to his radiation for much longer, so hopefully we'll be able to get later appointments so I can take him when I'm done working. That would really work out great, as we wouldn't need to ask friends and family to help us out. But, we will just have to wait and see what happens.
I'm not sure how many folks who read my blog know about our old barn that's been collapsing over the last year or so, but our silo recently collapsed, too. Because our neighbors have an easement through our yard to get to their fields, we had to find a way to move the silo, as it was blocking their access road. We were finally able to get that done last week, with some help from our awesome neighbors! I'm only going to post one picture here, and if you want to view the rest, you can view my album on Facebook. Even if you're
not my Facebook friend, you can still click on this link: Facebook Silo Photo Album.
Oh, I forgot to mention Mother's Day! Aaron and Rachel were here for the weekend, and it was AWESOME to see them, as we haven't seen them since January. They had to leave by noon on Sunday, so we decided that we should all go out for breakfast. We went to a great restaurant in Wausau called The Blue Willow. They have awesome breakfasts! Erica was able to meet us, so for the first time since January, our whole family was together! It was just fabulous to have everyone together!
Speaking of Mother's Day, I have to tell you what my awesome kids did for me! Erica bought me 12 personal training sessions at Snap Fitness, as I've been working on losing some weight before Aaron and Rachel's wedding. Aaron, Rachel and Abby got me the Food Dehydrator that I've been wanting and a boatload of spices, etc. to make jerky! So, what's the first thing we did? Why, make jerky, of course! Abby brought out two of her venison roasts and we were able to make a boatload of jerky!
I plan on doing a LOT more than making jerky, as I have some herbs already planted that I intend to dry. I also want to try some apple slices, potato slices, and all kinds of other stuff! It should be fun!
So, that's about it for now. Nothing much else is going on right now. Hope you all are doing well!
As always, prayers are appreciated!
Julie
If you feel led to help with Greg's gas and other expenses while he is unable to work, please see --> Greg's GoFundMe
I've posted before about all the problems we've had with Greg's feeding tube, and they had not gotten better! After our trip to the ER because he was in so much pain and the doctor loosened the "retention ring" on the outside of his stomach, Greg had a LOT of oozing. And when I say a LOT, I mean a LOT! At first, he was changing the gauze pad around it a couple times a day. After the loosening, he was changing it 7 or 8 times a day! Any time he had the least bit of exertion, it would leak. And the nasty part was that it was stomach fluids/acids that were leaking out! Yes, that is YUCKY!
Because of the oozing, he had to see the surgeon (Dr. McDreamy) again. He wasn't available for Greg to actually see, so while Greg was in the Cancer Center for his radiation, the nurse texted him pictures of Greg's feeding tube and the issues he was having and was able to talk to Dr. McDreamy to come up with some solutions. I think that's pretty cool! Unfortunately, it still didn't resolve Greg's problems! He was to see Dr. McDreamy again yesterday, but again, he was quite busy. Once again, they sent pics via text message. Dr. McDreamy then talked to Greg and walked him through how to tighten the retention ring He also gave him some special cream because he was starting to get a rash from the stomach acids that had been leaking out.
Around 6 last night, Greg got a call from Dr. McDreamy, who was at his kid's soccer game! He had been thinking about Greg and wanted to know if he had been prescribed any antacids. We advised him that he had not, so he had us text him the pharmacy phone number and he called in a prescription for Greg and then texted me that it had been done! We were both very impressed that he would be at his kid's soccer game and call us to make sure Greg was being taken care of properly. Once again, Dr. McDreamy just proved what a great doctor he is, and what a great practice he is at. Since teaching Greg how to tighten the retention ring, Greg has felt better than ever, and there's been NO oozing!
So, just like with Goldilocks and the Three Bears, the initial feeding tube was too tight. The adjustment was too loose, but the third time, it was JUST RIGHT! Ha!
It's so nice to not have to worry about it any more and have it not only feeling good, but not oozing!
Praise the Lord for answered prayers and caring doctors!
Blessings to all!
Julie
If you feel led to help with Greg's fuel costs and loss of work, please check out Greg's Go Fund Me
As you already know, Greg had a PEG tube (feeding tube) put in on Thursday. He was in a lot of pain at the hospital and that pain didn't get much better over the weekend. I knew he was in a lot of pain, because he was cranky (VERY cranky), and very contrary -- and by that I mean, he argued with everything I said. If I would say the sky was blue, he'd say it was grey. Yea, that's how he gets when he's in pain. Now, mind you, he's in pain every day, from the nerve damage from his shingles two years ago, so this was a different kind of pain. He said it felt like he was being stabbed in the gut. That's just not good!
So, this morning, when I wasn't supposed to have to get up until 6:30 to start work in my new home office at 7 a.m., I ended up being awake at 5 a.m. to take Greg to the Emergency Room. I was up early because that's when my body made me get up. I knew Greg was still in a lot of pain, and I thought it best to get to the ER before the day starts and they get too busy. Why make Greg suffer any more than he already was.
We got to the hospital around 5:30 a.m., and they did their usual thing getting him into a gown, history, etc.. Then they wanted to put an IV in, so we asked for an anesthesiologist. They weren't very happy about that, and basically insisted that they have to try before they can call an anesthesiologist. Well, WE weren't happy about that, either, so we decided to wait on the IV, because, what if they don't need it? Most times, an IV in the ER is simply standard procedure, as a "just in case." I'm not willing to have Greg be poked numerous times on a "just in case" so we made them wait until the ER doc decided that Greg needed a CT scan (they have to inject stuff for that), so that's when we said OK. As always, the first nurse could not get it in, so another nurse had to try. She got it on her first try, but I have to say, if she didn't make it, and he would have had to be stabbed a third time, I would have made a call to the hospital administrator to complain. It's nothing against the nurses. I know they are just doing their job. Greg's veins are horrible from all the chemo he's received over the years, and I just can't handle seeing him wincing in pain from people trying to insert an IV. Seriously, those things HURT under normal circumstances! I really can't wait for Greg to get his PICC line next Monday so he doesn't have to keep getting stabbed multiple times.
Anyway, they gave him some very strong pain meds, and that really didn't do much to relieve the pain. He was sent for a chest X-ray because he has so much wheezing (from his sinusitis issues), and then he had to have CT scan of his stomach to see what was up with the PEG tube.
He also had some albuterol treatments because of the wheezing (as seen in this picture on the left).
After the CT scan, the ER doc looked at the scans and showed them to us. It appeared that the inside of the tube (which has a balloon on it to keep the tube in place, and the outside of the tube, where there is a circular "retention ring" that keeps the tube from going into the stomach. (Peg Tube Parts) So, it's being held on both sides, and was too squished together, or too tight, and that's what was causing all his pain, and that's also why the pain wouldn't go away. Looking at the picture linked above, what's between the balloon (inside the stomach) and the retention ring (outside the stomach) is skin and well, belly fat. If it's all being pinched together constantly, nothing is going to make the pain go away until you relieve the pressure.
The surgeon who placed the PEG tube checked the CT scans and had one of his partners, who was already in the hospital for other procedures, come and look at Greg and then turn the retention ring to loosen the pressure. There was an immediate sense of relief! Not complete, but definitely a difference! Greg had watched some of this on YouTube when he was investigating his pain, and told me that I could have done that. Sure, and if I did, knowing our luck, his guts would have started spurting out! Nope, not doing that! 😆
We were able to leave the hospital a short time later, and after the 30 minute drive home, Greg was HUGELY better! YAY! Praise God! I must say though, Greg is really pushing this "in sickness and in health" vow I made almost 28 years ago! HA!
So, my first day of work in my new home office didn't quite go as planned. Instead of starting at 7 this morning, I started at 10:30. Once again, my supervisor was fabulous about me being gone! I now understand why God didn't have me get that position I applied for a month and a half ago. Had I gotten that position, I would not be able to work at home, because you have to be in a position for a year before you can go home! Being able to be home is an integral part of Greg's care, as I can actually concentrate on work while I'm working and not worry about how Greg's feeling. If I were at work, I know I would be worrying about him at home alone, instead of concentrating on work. As always, God knows what's best for me, and, although it doesn't happen all the time, I now know why I did not get that position.
I was able to get six hours in today, and will make up an additional two hours later this week. Should be easy enough to do, because I have a feeling it's going to take my body a while to get used to sleeping as late as 6:30 a.m.! LOL
As always, your prayers are appreciated!
Blessings to all of you!
Julie
Greg's Go Fund Me
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
