I'm worn out -
Tom has been suffering severe spasms in his lower back since last Wednesday. They cause his knees to buckle and bring tears to his eyes. The radiation doc ordered a CTscan today- the findings revealing a blood clot near a kidney as well as what appears to be a touch of pneumonia. They've hospitalized him for 4 days while they dissolve the clot.
I'm feeling a bit lost - he's 90 minutes away and it seems like he's at the other end of the earth. The hospital is fabulous,and I am not concerned about his care, but being this far away at this time is unsettling.
Did anyone have blood clot complications during treatment? The docs say it is rather unusual to have one where his is located - that they usually show up in the legs. I'm grateful that his radiation doc called for the scan....

Glad everyone is back safely from the Vegas trip.
I've enjoyed reading your enthusiastic reports and your pix were great fun!
Love to all
Nicki

Dear Nicki

I'm so sorry to see that Tom has this problem on top of everything else. He is fortunate indeed that you are there for him. Hope he'll be home with you for the weekend.

Thinking of you, love and light from Helen

Nicki, sorry to hear Tom is having problems. I never had clotting issues that I am aware of. Hang in there and just pretend this is a business trip and he will be home in a few days. You are his angel and I'm sure he knows it.

Hey Nicki,
My thoughts and prayers are with you and Tom. The radiation days are still fresh in my mind as they were just so hard. Dan didn't have any clot issues, but the pain and not able to talk for 6 weeks really got to me. I felt very lonely even though he was right there. It all seemed like it would never end, but it did. I pray that Tom heals quickly and is back home with you soon. When Dan spent time in the hospital, I stayed in the hospital with him. They didn't always seem to like it, but it helped Dan a lot knowing that he was going to get great care from me!
Take care and God bless,
Debbie

Nicki:
As a lay person I would have bet on a pulled/strained muscle in the lower back. It is a good thing that we have doctors and not qualified to diagnose our selves. A speedy recovery for Tom....
Darrell

It is so good to come home to all of you..

My mom and dad went with me today, although I knew my mother would be heartsick to see Tom as he is right now. The visit was good for him, however, as I could see a bit of color coming back to his face while we were there. His voice is definately going - and he has no saliva at all now (I think that is because he has had 2 weeks of the 'boost' radiation instead of IMRT).

The doc said today that the pain comes when the blood is trying to leave the kidney, and it encounters the clot. Let's just hope this heperin (sp?) works quickly, because the pain is just incredible........

I'll hope tomorrow's update tells of great improvement! For now, I'll go take my medicine (lucky me - root canal on Monday! )
Good night, all..
Nicki

Hi Nicki,
I developed a clot in my leg following my surgery. It was very painful at the time and was also quite discouraging - it added to the feeling of my body failing me. However, the meds were effective in dissolving it and the painkillers sort of took care of the clot pain as well as the radiation pain. My doc said that cancer patients are more succeptible to clotting than other folks.
Hang in there. Hopefully, things will get better quickly. Best, Sheldon

I'm home again, and Tom has improved a bit. The pain is manageable now, thank Goodness, and he has been able to rest a bit (as much as you can in a hospital!) Sheldon, you hit a nail on the head with the 'feeling of my body failing me' sentiment. I think that has already caused considerable anger in Tom, and this is just one more thing on the pile. The morphine drip has dulled the pain in the kidney area, as well as the throat, so the attitude was better today. He received visitors all afternoon (which, considering the long drive for everyone, was impressive) and although he was exhausted when the last of the friends left, he was thankful for their effort and concern. We are blessed.

They feel he should be ready to come home next Tuesday The doc did mention, too, that cancer patients are more likely to have blood clots......

I'll sleep better tonight
IT IS SO NICE TO MATCH NAMES WITH THE PHOTOS FROM VEGAS!! Thanks, shutterbugs!

Hi Nicki
So glad that at last there is some improvement, I'm pleased that the pain issue has been resolved, sometimes the constant pain dulls everything to a point of total dispare and it's not until the pain backs off that you get back some control of your life.
Sunshine... love and hugs
Helen

Hey Nicki, glad Tom is improving. Give him our love and prayers for further improvement. Prayers for you and your root canal, also.

Nicki,

I'm glad to hear Tom is doing better -- also glad that he seems to have doctors who are staying on top of things.

Take care of yourself too. I know it's an extra drain on your strength when you have to travel so far back and forth to the hospital, so please stay well.

Cathy

Nickie,

Sorry to hear of the rough times. Even a year later it seems every few weeks I learn of another little problem in the ol' body. I figure if I could trade in this 80 year old body for a 48 year old...I could live another 40-50 years.

The hospital I was in (and out of) here in Dallas (Zale Lipshey) has rooms with a bench that converts to a bed for my wonderful wife to sleep in when I was hospitalized. It was such a nice touch and so comforting to just look over in the middle of the night and see her there. For a little extra fee they even had suites so several people could stay.

I hope Tom gets home as soon as possible. Hang in there and tell Tom we are thinking of him and cheering him on in this wild roller coaster ride.


Ed

Hi, Ed...
There was a patient in the bed next to Tom on Wednesday night, or I think I could have persuaded them to let me stay with him. It is depressing to go to bed without him. The 'neighbor's bed' is empty now, but I've got appts at 7 am and noon tomorrow, so it would not make sense for me to stay over tonight

I'm on my way out the door to see him now. Hoping to hear that his blood tests are coming back in the right range so he can come home tomorrow. How boring can it must be - - can't even "look forward" to meal time!!

Love you all! It is a gorgeous day here in Virginia and I hope everyone enjoys God's goodness today.
Nicki

Dear Nicki
I really hope Tom gets out of there asap.
Pete was in for three weeks during treatment and it was awful...he went in because of dehydration and ended up with a life threatning infection.you really have to be there as much as possible to make sure he is getting the proper treatment.Just the thought of Tom being in hospital for any length of time gives me the heebies.
Take Care
marica

I'm sad tonight, Marica, because the blood is not doing what it is supposed to do and it does not look like he'll be out before Wednesday. That makes a week....They added dehydration to the list of problems I am happy that there is no one in the room with him - and with plenty of empty rooms on the floor, I hope it stays that way.
He's lost all semblance of color in his complexion and his face is so thin. He's really feeling the effects of the radiation in his throat, and his skin is cherry-red. I'm rapidly becoming depressed seeing my handsome guy going downhill. YOu all have done a good job preparing me for what's coming, but it still somehow "did not compute." I want my husband back, and I know it is going to be awhile.

I won't be able to see him tomorrow because of my root canal, but I'm planning on calling his chemo doctor (who, hopefully, will be back from Europe) to find out how all this will impact his scheduled chemo treatment on Wednesday.

The care has been excellent; the nurses are just great! I see everyone put on fresh gloves and wash their hands when they come into the room...so I'm hopeful nothing is coming in there that could harm him.

Thanks, all.
Nicki

Nicki, it sounds like Tom is about where I was during about week 6 of my radiation treatment, minus the blood clots. On morhphine, IV what what looked like Ensure going in, not able to drink/eat much of anything because of the pain and generally looking and feeling like hell.

The good news is, I did eventually get better after a couple of weeks, and each week made some progress. From what I gather he's almost at end of treatment, and this is the hardest part. Once he's done he can start healing and things will get better.

You sound like you're burning the candles at both ends, however, be sure and take a couple of hours out for yourself in the next couple of days and take a breather. You can't be a good caregiver if you're worn out.
Bob

Hey Nicki,
I am praying for the blood to do what it's supposed to do in Tom. I know those long days/nites with the hubby in the hospital. I pray that God gives you peace and comfort and healing for Tom. This is such a hard thing to go thru...it definitely changes one's life. I did feel the peace from God at my lowest points.
Take care,
Debbie

Nicki,

Sorry to hear about Tom's extended stay at the hospital. I can tell you are a bit lonely over it and I can't help but think of my wife during my hospital stays. Like Bob is telling you, take a little time for yourself to keep recharged so you can do all you want and need to do for Tom. If I may offer a suggestion, when you spend a bit of time for yourself, try to find something a little more fun and relaxing than a root canal .

Best wishes and praying for healing for Tom and comfort and peace for both of you.

Ed

Dear Nicki
Hang in there...you are at a low ebb, a very hard time for both of you. Ed,Bob, and the rest of the guys are right, as much as you want to be with Tom ,you need time to just take a walk and recharge the batteries. Do you have family to help you? You sound very tired.

We will be here if you need to scream, rant, or receive any support we can give. Hope your root canal goes Ok.

Take care.
Marica

Tak

It is another gorgeous day here - and I give thanks for the sun and gentle breeze...they help with the inner spirit.
My root canal went well enought, though he had to hit me 4 times with the pain killer and now one side of my face needs a lift! I've got good pain pills on hand!
Seems they've overshot their goal with the blood thinner, and now they have to thicken things up again I don't think he'll have any blood left by the time they finish taking those tests every few hours!
He definately cannot eat anything by mouth now. It hurts for him to swallow water. A great nutrition worker brought him mashed potatoes, pudding, cream pies in an effort to get him to eat a little, but he just can't do it anymore. I am SO THANKFUL for the PEG. He's got 3 weeks and one day to go with radiation - and one more chemo round that we know of....

Has it happened that one goes completely numb from the anxiety? I feel so totally empty...can't really describe it any other way.
I'll have to take a Xanax tonight I think..right after I soak in the jacuzzi....certainly can't hurt, right?

One of the best things (and there are some) that has comeof all this nastiness is that we are finding the depths of our relationships - family and friends. I have so many people offering rides (who live further away from the hospital than we do!) and support that I am overwhelmed.
Looks like next week I won't have to drive at all! The prayer chains are fabulous and we can feel that power - - truly makes one humble.

You all are such a vital anchor and I must admit you know more of my anxieties, etc. than anyone else. I wear a pretty good game face most of the time, but those that know me well pretty much see through that..

I'll make dinner tonight for my daughter and myself...something soft!
Love
Nicki

Glad you're taking care of yourself also, Nicki. All the better for Tom to see that you are positive, glowing and obviously coping. You are doing so well, best wishes to you all with love from Helen

Yes, Nicki, anxiety can produce feelings of numbness or emptiness. I think there are just times when the body says, "I've had enough, I need a time-out from feeling." You are under a lot of stress, as you know!, and this stress can produce an overload of anxiety, which in turn can produce the numbness. Good news is that you appear to be doing all the right things to cope with this: letting other people help you & Tom, enjoying life's small pleasures (a beautiful fall day) and taking time to take care of yourself (e.g., soaking in the Jacuzzi, cooking something special). Take good care of yourself so you can take care of Tom! - Candace

Sister of man w/base of tongue cancer, stage IV, Dx 4/03, finished Tx 9/03, 12 clear exams and counting!

Hello Nicki,

I can't add much that has been posted already.
I think you are doing a great job as Tom's caregiver. Please take time for yourself. It will help you long term to remain strong as this journey you and Tom are on can have many surprises. Hoping Tom comes home soon and continues to heal. Remember it takes one month of healing for every one week of treatment. Measure Tom's progress in weeks not days.

Best Wishes, Danny Boy

Just wanted to say "I love you."

Keep fingers crossed that he can come home tomorrow after chemo....... They haven't said as much, but I'm hoping.

Didn't go to see him today as the lawn needed mowing in the worst way. I'm baking pies to take to the nurses, the chemo room and the radiation people. They are wonderful, all of them!
God bless each of you -
Nicki

Hi Nicki, hope Tom is feeling better.
I sure goofed on the back strain diagnosis.
Guess the ER goofed also missing the blood clot. Sure glad
the doctor caught it. Also glad he has you taking care of him!

Nicki,

I know Tom is home now and I am glad for both of you. There was no feeling as bad as laying in the hospital bed in the middle of the night, missing the family so much...

I am also hoping (and praying!) one of those pies is quickly traveling the continent looking for my house. I feel so guilty that I can't help cut your grass (and get to see the prayer garden) but one bite and I will soon forget my guilt!

Give Tom a hug for me!

Ed

Tom's home - thank the Lord!
He's looking pretty rough, and he's weak as a kitten, but happy to be here He's going through a major bout of vomiting although he can't get anything down his peg. Tummy is too full and the constipation issue isn't resolving despite all attempts. He's miserable, to put it mildly.
We didn't do chemo yesterday; postponed it until next week. The doc has offered to break this last dose into daily or weekly sessions, but I think Tom wants to gather strength over the weekend and then get the full dose in one shot...be over and done with it. Only 13 more radiation treatments!

Hey, Powerlifter! When we are finished with this, I've promised Tom I'll hire a trainer and we'll both get back into shape.....may need to hire you! Tom had literally no body fat to lose, so everything that has come off him is muscle. We'll really have work to do...

Hi Nicki!

In many ways you were much more "prepared" for this than most of us as you have been nosing around here, asking questions and getting ready for the wild ride. I am sure, though, that just like most of us, you were shocked to see someone you love suffer from the treatment like Tom has. You are so special to be in the role you are and I pray every day for God to guide you through this and shower you with His love.

I remember when my mother was very ill and went down to 40 or 50 lbs. When I looked at some picutres of her after she passed away I made a comment to my sister that our mother really looked bad in the pictures and she told me the picture made her look much better than she really did in life. I hardly noticed it as we went through each day. I always thought that was the gift God gave to me so I could make it through the horrible things we went through that year.

Through that experience and a few others I have found that God drops little signs of His beauty and love to remind us that no matter how bad things are, He is close by to bring a smile to our faces when we most need it. I am praying that He touches you in a very special way each and every day!

Ed

Ed, you are wonderful. We had a very bad day, and I needed to hear something comforting. Thank you.

I was on my way to work this morning, when my cell phone noted a message. It was the chemo nurse saying Tom did not have the option of waiting until next week for chemo...there were no openings, and he'd have to be in today. I turned around, called Tom and by the time I got in the door, I had a very unhappy - almost angry - man stubbornly sitting in bed. He did NOT want to go....we had an unpleasant 90-minute ride - then he wanted to prescribe his own dosage of chemo - Well, you get the idea. I know he wasn't mad at me, personally, but it sure felt like it. It got to me enough that I did cry..I think I was feeling like he was going to blame me for adding to the 'misery factor.'
We did make it through the chemo and the radiation....got home at 7:30.....LONG DAY. We are both exhausted, but I think I'll watch the debate, anyway.
Love you all....... I did actually come home to a lovely floral arrangement sent by loving friends! God is good!
Nicki

Nikki & Tom, this disease has no mercy does it? My sister who is trying so hard to be the sunshine in my life, she came on this site one time. She said that after reading all these stories she cried for days and was sick to her stomah for almost a week. I told her "WELCOME TO THE CANCER WORLD". She has always been great with me and others, our Mother also had cancer, passed away 22 years ago. She asked me how do you get on there and read this, doesn't that just push you over the edge. I told her that it kicks my butt most of the time, but nothing as to what is happening in the peoples lives that are writing the posts. One day it will be me telling that there is nothing left for me to do, and I will need support from others to help ME thru this. THat is why we all are here to help in some small or big way. I pray that things will get easier for you two, with radaition treatments still to go, I know it will be some time before "EASY" fits into your sentences. I have been there too, GOD bless you both, you are never alone,,,,,ALWAYS Miss Vicki

I do a lot of heavy sighing these days, Miss Vicki. I, too, sometimes wonder if I am torturing myself needlessly by coming on this site and reading the not-good news. Then I realize how uplifting the good-news stories are, and how good the people here are me - - not only to help me understand what will be happening, but also how to cope with the tangle of emotions I feel from day to day.
After a very long day, Tom had a good night. We are planning a few little things today to get him out of the house and give him something a bit more interesting to do than sit at home. His weight went down again while he was in the hospital...it is 133 today, so we are doing damage control.........
Hope everyone has a wonderful weekend.
Nicki

Hello Nicki,

You might want to try giving Tom some smoothies thru his peg tube. It lke eating a large malt. It has 1300 calories each. I am eating two per day plus at least two meals to boot. Having my own weight problem. Am bound and determined to add weight every week!!!

1-cup whole milk
1/2-cup half & half
1-Package carnation instant breakfast
3-Tablespoons Oveltine
1-Tablespoon Malted milk powder
2-cups ice cream

It makes a little more than 1 tall glass can hold.
Tell Tom to hang in there. He is not alone and many of us can relate to his feelings. I think your doing a great job as his caregiver, make sure to rest yourself. Charge up your batteries as often as you can. Hoping Toms treatment goes by quickly. The end is in sight!!!

Danny Boy