marylloyd

Lainey,
It’s the poem you sent above in your comments to me. It seems to be cut off in the middle. If you could e-mail it to me with your phone number that would be great. We’re doing okay. The nights are the worst and the holidays! You know all about that. They gave me a candle with Tom’s picture on it that I light everynight by my bed and I light one under his big picture that we blew up for his funeral. I’d like to get that one on here. It’s a great picture of “farmer Tom”. It just feels like he’s closer that way. I’ll be in touch. Love, Mary

We’ve made it through the hardest part with my Tom’s calling hours on Fri. and service on Sat. Everything was perfect. Tom told me to do what I wanted and I think he would have been happy. My Tom was a great singer like Teddy. He did musical theater in his youth, sang in the Ohio Youth choir throughout Europe when he was 16 and in church choirs the past 20 years. In 1993 his Dad, himself and 3 brothers did a mini-concert at church that my sister-in-law recorded but I had never seen. I was laying awake the Sun after he died thinking of the service and decided to call her and see if she still had the video. She did so we played it in the middle of the service. They were so good, no one had a dry eye but it was really special. We also had a family party video from 1986 where Tom and his brothers played guitar and sang while all of our kids ran around playing their toy guitars etc. We played that during the calling hour before the service. After the service my best girlfriend came up to me and said “leave it to Tom to figure out a way to sing at his own funeral!!” That was great. My 2 son’s and stepson were unbelievable strong and each got up and eulogized their Dad and my daughter and I wrote

Hi all,
Well, Tom’s being Tom and making somewhat of a comeback. He rested up after not sleeping for days and is now much more alert and able to get around better. His belly is swollen and uncomfortable so hospice is scheduling a paracentisis for sometime this week. Our hospice nurse suggested last week that we move our holidays up so we had Thanksgiving on Sat. We had a nice time. All of the family was together for the first time in a long time for Thanksgiving. If he’s still doing well we’ll have another one in 2 weeks but I think I’ll make lasagna!
He isn’t in any pain which is a real blessing and is able to eat. I have to thank his Dr. in Columbus for doing the preventive stent placement in his duodenum in July. He’s never had any issues with eating or vomiting etc that so many others have had.
All in all we’re doing okay. We all have our moments but I am really glad that I called hospice in and recommend it highly to any one who is on the fence about it. They are fantastic. I will have to pay a lot forward someday when this is all over. I’ve told my kids they will too!
Thanks for all of your support. I feel everyone’s love and hugs and truly appreciate it! It has been a long journey and I’m glad Tom has been an inspiration to so many on here through the years.
Love to all of you, Mary

Thanks friends for all of your support and the needed humor, Lainey!! Maybe I’ll bake myself a cake! Tom wants me to get some halloween candy on sale but a cake sounds better! We are home for the present! If I was Tom I would refuse to go to the hospital again and just let things happen. He has had hiccoughs for 4 days now. The meds they gave us don’t work and actually cause him to have breathing issues. If anyone has a magical cure let us know. It’s probably due to liver failure. I can’t remember anyone else on here complaining about hiccoughs like this. It seems very unfair for him to have to deal with these too after everything else he’s gone through but this disease is anything but fair! I feel more rested and my oldest son moved back home after trying to live with a friend for 6 weeks. I figured it wouldn’t work out and am glad he’s home. He can help a lot, watching Tom and helping outside with things.We will just take one day at a time. Tom isn’t in pain which is the one thing he was worried about originally so that’s good. He gets confused but I would be out of my head if I had the hiccoughs for 4 days straight! They do subside a little at night so thats something. We both get some sleep.
Pamela,
We are from the Atwood Lake area, south of Canton about 35 miles. I can’t imagine going clear to Michigan, Columbus is bad enough! Have you ever considered transfering her care to OSU? They are great there. I credit them for giving Tom over 5 years of life that I really don’t think he would have had if he had gone elsewhere! I am so sorry for your daughter and you and your family. As hard as it is to lose my husband I can’t imagine watching one of my children go through this. It would be so heartbreaking. I wish there was something we could do for you to make things easier. We have gone to Aultman for Tom’s varices when they bleed but it is not OSU! They usually can’t even get blood or an IV started. I feel so much better when he’s at OSU so I can relate to you wanting to get to Ann Arbor but that may not be possible down the road. I have heard a lot of good things about University Hospital and of course theres Cleveland Clinic. Those are the two I would recommend that are the closest to you. If you want to e-mail me feel free. I don’t have my computer hooked up right now so I don’t respond too quickly. You can call me at 740-269-1715. I’d love to help you in anyway possible. All of our thoughts and prayers are with your daughter and your family. This is a wonderful site with tons of support. Love,Mary

Hi friends,
Here it is Oct 20th and more updates, unfortunately not positive. We went to Columbus on on the 10th but no chemo was given due to low platelets. He was having some blood in his drain but nothing really alarming. By Weds evening it was getting worse and by Thurs even more,plus he started with the shakes and vomiting so I tried but failed to get hold of his Dr. so I ran him to the ER at OSU. I hate taking him to the ER to be admitted but had no choice. It turns out he was once again septic with bacteria in his bile and blood. They said I had gotten him there early but a week later and he is still there. They are sending him home on IV antibiotics and anti-fungal medication this time. Hopefully that cures this sepsis once and for all. They changed his drain again today, the new one wasn’t flowing properly and hopefully he will get home tomorrow. Lainey I think Tom and Teddy are a lot alike. I wish Tom accepted things as well as Teddy did, but he is younger and feels cheated about a lot of things. He started on zoloft but he’s really quiet all of the time and seems really depressed. A neighbor of ours commited suicide a few weeks ago after hearing that her cancer was back and that seems to have really bothered him a lot. Anyway we’re hanging in there as well as possible. We’ve been a team for a long time so I guess if anyone would be”wedding cake toppers”, it would be us. I really hate to see winter come- I dread emergency trips to Columbus in bad weather. I started out for home last night at 6 pm and ended up turning around and finding my way back to the hospital. It was pouring out and obviously a lot of crazy drivers got in wrecks. There were three calls for trauma cases coming to the ER right after I left!
I hope all of you are doing well. I don’t know how you all stay so strong after losing your spouses. I really dread going through it. Take care and thanks for your support. Mary

Hi friends,
I feel like I need to write a book about the past few weeks but I don’t have time and I am lousy at typing! I will keep it short and sweet. He had his biopsy on Thurs. Sept !. Friday night in the middle of the night he woke me up because he was vomiting blood. I rushed him to our local hospital where they admitted him to the ICU. He was bleeding from his esophageal varices so they banded them, gave him a buch of blood and watched him for a day or so. He started getting very confused and agitated which they blamed on ICU psychosis but after he went to a regular room and continued to get worse they found his ammonia levels were high. They treated him for that with lactulose, a laxative, and he got better quickly and came home on Thurs, the 7th. He was doing pretty well so we went down to see about starting the clinical trial on Tues the 12th but his biopsy came back inconclusive so he didn’t qualify and started chemo instead. ( His recurrence is around his duodenum not in his liver, he has lesions in his liver but obviously they aren’t cancer). He felt lousy on Weds, went to a followup appt with his Doc that fixed the varices locally, came home and crashed on the couch. I checked his temp about an hour later because he was freezing and it was 103.8. I rushed him to Columbus and they found he was septic with bacteria in his blood and bile. They changed his bili drain and started IV antibiotics, almost admitted him to the ICU there because his blood pressure was so low but that got better. Now his blood counts are very low so they are talking about him being there for another week! People ask me how I am and I just say I am along for the ride. I feel like our lives are completely out of our control. I just have to go along with the flow and that drives me crazy because I tend to be a bit of a control freak! Lately we have had a ton of people offering to help in any way, I’ve always been reluctant to accept but I accept gladly right now. Things are pretty overwhelming. Last Sat on a beautiful Sept. afternoon almost a hundred people came and helped pick our pumpkins for us. We were in Columbus and our daughter called us in tears when she saw how many had shown up. We cried too. We have the best friends and neighbors in the world!! I hope everyone is hanging in there. That’s all we can do. Take care and thanks again for the love and support on this blog. Mary