We're in Houston at MDA, and Jr is having tests, scans, etc. The doctor in charge of him said they will have an answer Friday and end the confusion of one doctor saying one thing and another saying something else. We are hoping so.
e
Wednesday, October 28, 2009
Tuesday, September 1, 2009
Aug. 31 doctor appt / scope
The doctor said he enjoys scoping Jr because it is so easy - ? - big nostrils? He stayed inside his throat a long time - two times. Short version is that he sees spots on his throat that weren't there last month. They may be bad or they may not be. In four wks at the next scope, if the spots are gone, that's great. But because of the fast-growing and agressive cancer Jr has, if the spots are still the same, Jr will go to OR for biopsy. If spots have changed or grown, then Jr will go directly to MD Anderson in Houston.
Sunday, August 16, 2009
scan results
The doctor we saw today brought in 2 new scan readers who said that they would not rush out and have surgery based on the scans, but retake them in 6 wks plus another scope w/ biopsy in 2 wks since what he has is a fast growing cancer, well, I guess to see if it has grown. He said on a scale of 1-12, Jr's cancer was a 12 and now based on glow in scans he figures it is a 4 which is a lot better. But since cancer is what it is, it will have to be dealt with if it turns out to be what it looks like -- but that is later down the line. TODAY IS A GOOD DAY AND BASICALLY WE ARE GOING TO GO INTO WAITING MODE AGAIN.
Thanks for your continued prayers!
Thanks for your continued prayers!
Friday, July 24, 2009
It has been a while
We have returned from our visit to LA and had a wonderful time visiting with everybody. Of course all our friends and relatives were happy to see how good JR looks (maybe I'm prejudiced), and except for the fact that he can't talk and makes strange noises when he tries to eat, etc. he feels good. AND believe me his momma cooked A LOT for him! We surprised her. I'm just glad she didn't have a stroke when she opened the door and saw him standing there. We wanted to go to church w/ her to thank her members for their prayers, but Gov. Jindal was going to be there so didn't want to take the attention from him. (That's a joke.)
Since JR can't talk people sometimes act like he's deaf too. Ex: While we were at his mother's, he was sitting there w/ us, but she asked me, "Does Bub want any coffee?" I said, "Well, ask him because he'll nod or shake his head or give a thumb's up or down," while JR was pointing to himself, letting her know he could answer for himself.ha ... It was so good to see people who haven't been able to come up too. We got to spend a little time w/ Daniel, Hagen & Stephenie. Sweet Hagen is as active as ever and kept telling his Papa if he would eat a cookie it would make him talk better!
Friends in S'port had a "gathering" for us which was great. Our friend, Buddy, who also has throat (and brain) cancer, can't talk either so he and JR got a kick out of being around somebody else who "talks" the same way. Both had extra-sore throats the next day from laughing so hard, but what a wonderful reason to hurt! The food and fellowship were wonderful, and we attended PBC Sunday morning (Jim's SS class) so was able to thank more people for their prayers. They were having business meeting and supper that night so we went and visited for a while.
I had a number of emails complaining "about no updates on the blog", but there isn't really much to report except that our visit down was wonderful and the BIG scans are set for Aug. 12! Next week JR has 3 doctor appts, including another scope. He is mowing today. His energy level is improving, but his throat is still extremely sore - part of the recovery.
Other good news: Out of 80 contestants, Phaedra is one of 8 finalists in Branson contest set for Aug. 15 at Hughes Bros. (I think) Theater in Branson so that will be fun. (Open to the public too.) Garden is putting out good -- enough to share. Tomatoes are huge. Lost two cats while we were gone; kids found bodies. Ugh! They (cats) went into the yard w/ the dogs -- and people say cats are smart! Two left. Phaedra and kids came out and fed all the critters & picked garden while we were gone. Makenna takes horse-back riding lessons so it was extra great that last night at the rodeo, she won a brand new leather saddle w/ an engraved cross on it. I'd put out the word before we left for LA that I was looking for a good child's horse so maybe soon we'll find one to put the saddle on. We continue to covet your prayers for JR ... and Buddy ... and Beverly ... etc.
e
Since JR can't talk people sometimes act like he's deaf too. Ex: While we were at his mother's, he was sitting there w/ us, but she asked me, "Does Bub want any coffee?" I said, "Well, ask him because he'll nod or shake his head or give a thumb's up or down," while JR was pointing to himself, letting her know he could answer for himself.ha ... It was so good to see people who haven't been able to come up too. We got to spend a little time w/ Daniel, Hagen & Stephenie. Sweet Hagen is as active as ever and kept telling his Papa if he would eat a cookie it would make him talk better!
Friends in S'port had a "gathering" for us which was great. Our friend, Buddy, who also has throat (and brain) cancer, can't talk either so he and JR got a kick out of being around somebody else who "talks" the same way. Both had extra-sore throats the next day from laughing so hard, but what a wonderful reason to hurt! The food and fellowship were wonderful, and we attended PBC Sunday morning (Jim's SS class) so was able to thank more people for their prayers. They were having business meeting and supper that night so we went and visited for a while.
I had a number of emails complaining "about no updates on the blog", but there isn't really much to report except that our visit down was wonderful and the BIG scans are set for Aug. 12! Next week JR has 3 doctor appts, including another scope. He is mowing today. His energy level is improving, but his throat is still extremely sore - part of the recovery.
Other good news: Out of 80 contestants, Phaedra is one of 8 finalists in Branson contest set for Aug. 15 at Hughes Bros. (I think) Theater in Branson so that will be fun. (Open to the public too.) Garden is putting out good -- enough to share. Tomatoes are huge. Lost two cats while we were gone; kids found bodies. Ugh! They (cats) went into the yard w/ the dogs -- and people say cats are smart! Two left. Phaedra and kids came out and fed all the critters & picked garden while we were gone. Makenna takes horse-back riding lessons so it was extra great that last night at the rodeo, she won a brand new leather saddle w/ an engraved cross on it. I'd put out the word before we left for LA that I was looking for a good child's horse so maybe soon we'll find one to put the saddle on. We continue to covet your prayers for JR ... and Buddy ... and Beverly ... etc.
e
Friday, July 3, 2009
TEA Parties
We are going to be at a TEA Party tomorrow, and where ever you live, you can find one nearest you by going to www.teapartyday.com.
I know that Bossier City is having one at the convention center so our LA family & friends will be indoors -- that's great w/ the hot weather. Ours here is outdoors, but at least it begans at 10am so we can attend until the heat gets too much. Tom Zigler of Zig Zigler Corp. is the featured speaker here! Just maybe we can get these liberals to listen to some common sense and slow down screwing up America -- if enough people shows up. Don't forget to make a sign if you can. It is great to see all the creative ways people make their point -- wearing tea bags on their ears, hats, etc.
I know that Bossier City is having one at the convention center so our LA family & friends will be indoors -- that's great w/ the hot weather. Ours here is outdoors, but at least it begans at 10am so we can attend until the heat gets too much. Tom Zigler of Zig Zigler Corp. is the featured speaker here! Just maybe we can get these liberals to listen to some common sense and slow down screwing up America -- if enough people shows up. Don't forget to make a sign if you can. It is great to see all the creative ways people make their point -- wearing tea bags on their ears, hats, etc.
Tuesday, June 30, 2009
Cancer scans cancelled!
The short version is: We cancelled the scans for tomorrow. We will reschedule so that they are done 3 mos. AFTER the end of treatments instead of 6 wks. This is because two of the five cancer doctors said that the radiation will be in his body for three months following the end of treatment, and this radiation can and does show up on the scans as CANCER. So when two of the doctors wanted the scans done by 6 wks Jr and I weren't happy about it because we didn't see the need for false readings, but we got talked into it anyway. BUT last week the ENT surgeon agreed w/ another doctor about waiting 3 mos to get a true reading sooooooo it has taken a few days and lots of calls back and forth between offices -- but the scans tomorrow are cancelled. We will be posting the new date when we get it so those who pray, can pray specifically.
Thanks again for your support!
Thanks again for your support!
Sunday, June 28, 2009
a funny
People keep asking if Jr is still clapping when he wants me. Yes! And he has large, loud and hard-clapping hands. I have suggested that when we are in a public place that he may want to walk over to me and poke me w/ a finger or motion to me what he wants, but so far he doesn't seem to like that idea.
When we went for the scope, he was called to the front desk before we went back to see the doctor. I was visiting w/ the kids untill I heard a loud "clap-clap" so I jumped up and hurried over to him. The waiting room was plenty full and people were laughing, including the two women who worked at the desk. One of them asked, "Are you his wife?"
I said, "Think about that. Do you really believe any other woman would run over here when he claps?" She really thought that was funny. Guess you had to be there, but when he gets his voice back, it will be a whole new world for Mr. Marze.
When we went for the scope, he was called to the front desk before we went back to see the doctor. I was visiting w/ the kids untill I heard a loud "clap-clap" so I jumped up and hurried over to him. The waiting room was plenty full and people were laughing, including the two women who worked at the desk. One of them asked, "Are you his wife?"
I said, "Think about that. Do you really believe any other woman would run over here when he claps?" She really thought that was funny. Guess you had to be there, but when he gets his voice back, it will be a whole new world for Mr. Marze.
Thursday, June 25, 2009
Scope results
We are having a celebration and praise time!!!! Can you hear the shouts? My heart has been tight for so long it took a while to sink in, and Phaedra was there w/ us when the doctor did the scope but she just asked if she really heard what she thought she heard! The new (to us) Dr. Black (ENT surgeon) scoped Jr and said he did not see any signs of cancer!!!!!
He said Jr's throat is still mangled from the radiation and will be for a while which is prob what is causing the gagging, strangling, etc., and there will still need to be scans and dyes ran to look for cancer that the scope can't see -- BUT this is a great day and the news is good! We are thankful for what we heard today. The doctor will be checking him for cancer each month for the next year, and he said other stuff, but we'll worry about that later. Right now, we have had GREAT news today and we're wallowing in it.
Donnell and Bonnie were here to watch Phaedra's kids in the waiting room so she could be there w/ her daddy and me during the scope, and we appreciate them. I think they are glad to share the good news w/ us because they have been faithful to stand w/ us during these past months as has many others. We are blessed in our friends. We want to especially thank all you prayer warriors who have covered us in crying out to Jehovah God on Jr's behalf. Words are not adequate for what we feel, because if we believe anything at all it is that God has the last word in any event. We are just thankful that He heard the desires of our heart and blessed us with wonderful news this day.
Also, we are so sorry for the families of Dale Marcus and Ronald Lee Dowden because they both lost their battles w/ cancer this week. These two men were so close to Jr for so many years. They fought long and hard, but are at peace now.
He said Jr's throat is still mangled from the radiation and will be for a while which is prob what is causing the gagging, strangling, etc., and there will still need to be scans and dyes ran to look for cancer that the scope can't see -- BUT this is a great day and the news is good! We are thankful for what we heard today. The doctor will be checking him for cancer each month for the next year, and he said other stuff, but we'll worry about that later. Right now, we have had GREAT news today and we're wallowing in it.
Donnell and Bonnie were here to watch Phaedra's kids in the waiting room so she could be there w/ her daddy and me during the scope, and we appreciate them. I think they are glad to share the good news w/ us because they have been faithful to stand w/ us during these past months as has many others. We are blessed in our friends. We want to especially thank all you prayer warriors who have covered us in crying out to Jehovah God on Jr's behalf. Words are not adequate for what we feel, because if we believe anything at all it is that God has the last word in any event. We are just thankful that He heard the desires of our heart and blessed us with wonderful news this day.
Also, we are so sorry for the families of Dale Marcus and Ronald Lee Dowden because they both lost their battles w/ cancer this week. These two men were so close to Jr for so many years. They fought long and hard, but are at peace now.
Monday, June 22, 2009
Doctor visit today
Jr saw the radiation doctor today. He said the outside was healing good which we knew. He looked inside and said he could see a hole not healed, but getting there, which was causing a lot of the burning. He didn't do a scope because the ENT surgeon Thurs. is going to do one to see if he can tell if the cancer is gone. This doctor, Smith, said they would do dyes and other stuff to find out if the treatments killed the cancer, but since it was a large tumor and the radiation was extreme, there could be tissue in his throat causing him to gag, strangle and not swallow that needs to be removed surgically. He was surprised that Jr's voice has not come back more. It is still a whisper. Jr said he could live w/ that (I read his mind anyway), but he'd like to be able to eat. He is down to 207 lbs from 235 and it shows. The chemo is still in him because his body hair is stiff like a porcupine and his eyebrows are like they have been singed w/ fire. He is losing a lot of hair too. They said the chemo will be in him for 2 more months.
That's all we know.
That's all we know.
Sounding off on Obama - therapy
Jr says Obama can made him sicker than chemo. We didn't think we could respect him any less than we did because of his support and advocation for late term abortions, but each week proves us wrong. It has been hard watching him tour the globe griping, complaining and criticizing the U.S.A. and bowing and scraping to those who hate us, when it is this nation that people float, crawl, fly, swim and bribe their way into, and it is this nation who sends our military to defend against all odds and all comers. And when the U.S. leaves a nation (better off than before)and stained w/ American blood, then we continue to send them tax dollars to rebuild, feed the multitudes, etc. Jr was one of the men who fought in Veitnam, and all of us of that age and older lost friends and relatives on foreign shores, and our politicians -- beginning w/ the president, ought to be reminding people of the sacrifices which continue to this day -- not berating us!
What brought this on, you ask? The fact that Obama can't find words to criticize what is going on in Iran, but he can sure find words to vilify this nation that the "misguided" elected him to represent.
Those who are so happy to have all these czars take over private industry like automobile, banking and medical -- have obviously never tried to navigate the beauracratic mazes of other government-run agencies such as Medicaid and Medicare! This country was founded on private industry, and it is a shame what is happening now. Well, I feel better, and Jr says he feels better. Even when he was so sick w/ the chemo / radiation he went to the TEA Party and the National Day of Prayer. For those who disagree w/ our little rant, set up a blog page and you can unload about how much you like Obama's "change".
What brought this on, you ask? The fact that Obama can't find words to criticize what is going on in Iran, but he can sure find words to vilify this nation that the "misguided" elected him to represent.
Those who are so happy to have all these czars take over private industry like automobile, banking and medical -- have obviously never tried to navigate the beauracratic mazes of other government-run agencies such as Medicaid and Medicare! This country was founded on private industry, and it is a shame what is happening now. Well, I feel better, and Jr says he feels better. Even when he was so sick w/ the chemo / radiation he went to the TEA Party and the National Day of Prayer. For those who disagree w/ our little rant, set up a blog page and you can unload about how much you like Obama's "change".
Friday, June 19, 2009
Pray for Hughes family
One of our friends w/ cancer that I had listed for prayers, Buddy Hughes, has had treatment stopped for his throat cancer because the cancer has moved into his brain. I just talked to Karla, Buddy's wife, and she said God's peace is in them, and she covets our prayers. They have a son, Matt, who graduated high school last month. Than you for lifting this family up!
Wednesday, June 17, 2009
We're home.
Jr and I went to Branson for a couple days and nights to celebrate our 37th Anniversary. We thought it was the 15th until Jr's phone alert went off the 16th and said that was our ann. (He puts birthdays, etc. in the phone.) We enjoyed it -- part of the time. He hasn't been eating out because of making other diners run and dodge when he begins gagging (a real MAN's gag), but we tried it a couple times in Branson and had one successfully-completed meal. The other ended w/ him running to the parking lot and ... well, you know what. The mgr was so nice -- got me wet dishtowels from the kitchen. He also got really weak and nearly fainted (Jr perfers the term "passed out") while we were at a show and had to take naps a couple times a day -- but hey, it was a change of scenery for us after months of being at home or docs so we aren't complaining.
.
Neither of us is especially mushy but I did find an anniversary card that I thought was very appropriate for this challenging time in our lives that said:
"Hold on to me, and I will hold on to you through anything and everything life brings our way. Bring me your worries and I'll listen with my heart. Tell me what you need, and I'll do my best to give it to you. Love me even when it isn't easy, and I promise to do the same for you ..."
(Isn't that appropriate?)
Some men aren't good at being sick. This should not be earth-shaking news. My husband is used to being very active and healthy. Sometimes he is not in the best of humor through all this sickness, but he is not so bad that it is a situation such as another wife told me about. She said when her husband got cancer she was praying, "Oh, Lord let him live!" But after wks of treatment he screamed at her, even throwing things, cried and whined. She said that gradually her praying has transitioned to, "Oh, Lord, You know best so if You are ready for him, I'm ready to let him go."
Something is still not right so Jr now has an appt w/ a new ENT we were referred to because his throat should be better and he still can't swallow w/out washing it down w/ water, etc. That's next wk and the radiation doc wants him back too next wk so he's all excited about those visits coming up.
We have 2 friends who are going through chemo / radiation: Buddy Hughes and Jim Branim, so remember them in your prayers please. Congrats to Kenny Wreyford who just finished!!!
.
Neither of us is especially mushy but I did find an anniversary card that I thought was very appropriate for this challenging time in our lives that said:
"Hold on to me, and I will hold on to you through anything and everything life brings our way. Bring me your worries and I'll listen with my heart. Tell me what you need, and I'll do my best to give it to you. Love me even when it isn't easy, and I promise to do the same for you ..."
(Isn't that appropriate?)
Some men aren't good at being sick. This should not be earth-shaking news. My husband is used to being very active and healthy. Sometimes he is not in the best of humor through all this sickness, but he is not so bad that it is a situation such as another wife told me about. She said when her husband got cancer she was praying, "Oh, Lord let him live!" But after wks of treatment he screamed at her, even throwing things, cried and whined. She said that gradually her praying has transitioned to, "Oh, Lord, You know best so if You are ready for him, I'm ready to let him go."
Something is still not right so Jr now has an appt w/ a new ENT we were referred to because his throat should be better and he still can't swallow w/out washing it down w/ water, etc. That's next wk and the radiation doc wants him back too next wk so he's all excited about those visits coming up.
We have 2 friends who are going through chemo / radiation: Buddy Hughes and Jim Branim, so remember them in your prayers please. Congrats to Kenny Wreyford who just finished!!!
Sunday, June 14, 2009
Missing Comments
Several people have let Elaine know they've left comments, but they're not showing up. Once you post your comment, please view the blog to be certain your comment appears. Jr. and Elaine appreciate your comments and look forward to reading them! Please try again if yours didn't work the first time!
Thanks,
Nina
Thanks,
Nina
Vietnam Vet - Tired of it all
One of the best reads I've seen in a long time can be found at http://ibloga.blogspot.com/2009/03/im-tired-by-robert-hall.html.
I think this guy says what so many of us thinks, and he says it so well. If you have a moment, it would be worth your time to visit his blog. I will be sending a copy to my state and national representatives. Robert Hall served 5 terms in the Massachusetts state senate.
I think this guy says what so many of us thinks, and he says it so well. If you have a moment, it would be worth your time to visit his blog. I will be sending a copy to my state and national representatives. Robert Hall served 5 terms in the Massachusetts state senate.
Saturday, June 13, 2009
Saturday, a good day!
Jr. had some bad days this past week getting sick, dry heaves, etc. which tears his throat up each time, but yesterday was good and today looks like it will be good. Along w/ improved health comes his determination to overdo so today he wanted to put some silicone on the skylight over the 2nd floor bathroom. He parked the tractor on a rosebush (!), instructed me to work the tractor lever to raise the scoop thingy up to the roof edge where he stacked 2 ladders on top of one another to climb up the steep roof -- while carrying tools and squirt guns, etc. I tried to tell him old men shouldn't climb on steep roofs, but he didn't listen of course. While he was up there, he was trying to tell me instructions for the tractor but I can't hear because he can only whisper and the motor was running -- and I'm over 50% deaf too. (I got the phone ready and pre-dialed 911 even though I don't know if they even come up here.) But, thank God he didn't fall and break anything.
Bonnie and Bobby just left today. We enjoyed their visit. This is the 3rd time Bonnie Sue has been here since Jr got cancer, and we really appreciate her and Bobby for taking their time to come visit again.
Jr said he was trying not to think of how much Obama paid to have the 3 muslims taken out of Gitmo to their island paradise or he will get sick again! By the time Obama pays a few million dollars per prisoner to bribe other little nations to take these potential terrorists, us taxpayers will be even more broke -- and he won't even let his girls go to public school! Oh, blessed are the ignorant...
Bonnie and Bobby just left today. We enjoyed their visit. This is the 3rd time Bonnie Sue has been here since Jr got cancer, and we really appreciate her and Bobby for taking their time to come visit again.
Jr said he was trying not to think of how much Obama paid to have the 3 muslims taken out of Gitmo to their island paradise or he will get sick again! By the time Obama pays a few million dollars per prisoner to bribe other little nations to take these potential terrorists, us taxpayers will be even more broke -- and he won't even let his girls go to public school! Oh, blessed are the ignorant...
Thursday, June 11, 2009
OLD UPDATES
Friday, March 27, 2009, 9:25 PM
Okay, JR had the surgery for feeding tube -- neither of us are liking this tube thing (more like a small water hose) AND the Houston oncologist calls this afternoon and says he doesn't agree w/ JR's treatment via the records, scans, etc. sent to him soooooo we are seeing him in Houston April 2 at 9:15. If Jr had this feeding tube put in for nothing ..... well, I'm trying to think of something nice to say. Nope, can't think of anything nice to say about it. The nurse told JR he could stick it in his underwear to keep it from flopping around, but that doesn't work unless you wear them up under your arm pits! We tried taping it to his chest, but he WAS so hairy that didn't work. Brought in the weed-wacker and now the tape will hold it - kinda. I can tell you from personal experience what happens if you forget to clamp it before you put liquids in it -- and, it isn't pretty! Also, what goes in a stomach via feeding tube can come back out if you forget to lock clamp!
They did my scope (upper) and did send off for a biopsy. So next wk we should learn if we are going to take chemo together. At least I like cheese a lot!
Hopefully nothing more to report till next wk.
----------------------------------------------
Monday, March 23, 2009, 4:27 PM
Okay, I know it has been a while and the phone line has been kept hot this weekend and today w/ people wanting to know what is going on so ...
we have the feeding tube surgery scheduled, an appt. w/ a Houston specialist the first wk in April depending on radiation and the radiation programming is proceeding w/ a little extra added on since the cancer is in lymph nodes. One chemo side-affect that JR is having is acne like a teen-ager w/ bumps over his face and trunk area. He is very sensitive to sun and heat and his face looks like he has a very bad sunburn. The bumps are also in his scalp. But his appetite is great. As soon as I finish cleaning up from one meal he is wanting to eat again, and the things he wants remind me of a pregnant woman: stuffed pheasant, salmon patties, Oysters Rock. -- all kinds of things that I don't usually cook and don't have up here on the mnt. BUT he has been told to gain as much weight as possible so I think he is going to be successful in that effort. JR is still doing great in spirit and humor; physically and emotionally - well, you get the idea!
Chemo is tomorrow. I dread all the moaning and groaning! Mine, not JR's. And it is too bad that some people have such a warped sense of humor that they think it is funny when I turn white and ask for a stretcher when they show their "ports" (artificial holes put in place for when their veins get burned up) or pop their tubing corks or pump liquids through their feeding tubes -- all in sight of everybody. People are constantly exposing private parts - and by that I mean a body part w/ blood or some kind of fluids coming out of it in an unnatural way that I'd as soon not see! These chemo patients have such strength to go through what they do, and I soooo don't want to throw up in a lap or land in a dead faint on IV tubing.
Thank you again for your prayers, cards and concern! They are gratefully accepted and appreciated -- more than you know unless you've had cancer or had a loved one w/ it. We hope and pray your life is filled w/ good health and many blessings.
Grace & peace.
----------------------------------------------
Monday, March 9, 2009, 11:08 PM
Spent first half day in dentist. W/ mouth / throat radiation you have to have all cracks / fixed so they are refilling old teeth and redoing crowns. Can't do any dental during or shortly after radiation.
We were at Radiation clinic till 5:30. That was a downer because the doc insists Jr needs a feeding tube and went on and on about it being such a big cancer on his wind pipe; future fried throat; and so on -- you'd think this was a world record cancer the way he talked!
Tomorrow is chemo all day w/ surgeon on standby in case his throat closes or something and he'll have his own nurse not to leave him all day. I'm staying w/ him too. The chemo is some kind of experimental stuff w/ rat parts in it -- which freaks me out, but Jr is okay w/ it! Jr said he's going to get up from there at the end of the 6 hr session, run around the office in circles and then ask for cheese! (They SAY it is hamster dna, but that's still a rat!)
He watched two Rambo movies to get psyched up for fighting the cancer. He's always been tough and can take pain very well, but grandkids have softened him up so ... after watching First Blood he was ready to do his own cancer surgery, w/ his hunting knife - no sedative. But I finally convinced him to wait for the doctors -- since we've got to pay them anyway.
(This last para. is partly fictionized. The rest is gospel.)
Well, that's all I know today. Tomorrow will be a week since we first heard the "cancer" word in regard to my special husband - seems much longer.
Grace & peace,
e
----------------------------------------------
(Unsure of dates for the following two posts.)
Announcement of cancer --
We were supposed to get the biopsy back on Jr Thurs. but the doctor called this evening. He said the results came back positive for cancer, and it is high priority so they have him set up tomorrow at 11:45 in Lowell for an MRI and another scan on his head and neck.
That's all I know.
We will appreciate your prayers.
Elaine
----------------------------------------------
Yesterday didn't go well w/ chemo. The kind w/ rat parts (one doc said it was mice protein and a nurse said it was hamster dna) gave him an allergic reaction and they had to stop chemo. Since he needs it fast and bad that was not good altho I didn't blame his body for rejecting it. But he needs it so ...
Today he took all 900 ml or cm of the rat part chemo!!!!!!!! That was answered prayer!
Tomorrow they fit him w/ the radiation helmet and began programming for the radiation. Since he has cancer in vocal cords through windpipe and lymph nodes, they will be shooting him from diff directions and the computer does it all so they said it takes hours and hours to program it correctly. And we want it to go to the right places! This is a good thing that treatment is started.
It looks like he will get a feeding tube in his stomach. We'd prefer a miracle.
There are just too many emails and phone calls to respond to right now, but we are so grateful for all the love, concern and prayers! Words can't express! You prayer warriors, you know what to do and thank you for doing it. We feel it!
Okay, JR had the surgery for feeding tube -- neither of us are liking this tube thing (more like a small water hose) AND the Houston oncologist calls this afternoon and says he doesn't agree w/ JR's treatment via the records, scans, etc. sent to him soooooo we are seeing him in Houston April 2 at 9:15. If Jr had this feeding tube put in for nothing ..... well, I'm trying to think of something nice to say. Nope, can't think of anything nice to say about it. The nurse told JR he could stick it in his underwear to keep it from flopping around, but that doesn't work unless you wear them up under your arm pits! We tried taping it to his chest, but he WAS so hairy that didn't work. Brought in the weed-wacker and now the tape will hold it - kinda. I can tell you from personal experience what happens if you forget to clamp it before you put liquids in it -- and, it isn't pretty! Also, what goes in a stomach via feeding tube can come back out if you forget to lock clamp!
They did my scope (upper) and did send off for a biopsy. So next wk we should learn if we are going to take chemo together. At least I like cheese a lot!
Hopefully nothing more to report till next wk.
----------------------------------------------
Monday, March 23, 2009, 4:27 PM
Okay, I know it has been a while and the phone line has been kept hot this weekend and today w/ people wanting to know what is going on so ...
we have the feeding tube surgery scheduled, an appt. w/ a Houston specialist the first wk in April depending on radiation and the radiation programming is proceeding w/ a little extra added on since the cancer is in lymph nodes. One chemo side-affect that JR is having is acne like a teen-ager w/ bumps over his face and trunk area. He is very sensitive to sun and heat and his face looks like he has a very bad sunburn. The bumps are also in his scalp. But his appetite is great. As soon as I finish cleaning up from one meal he is wanting to eat again, and the things he wants remind me of a pregnant woman: stuffed pheasant, salmon patties, Oysters Rock. -- all kinds of things that I don't usually cook and don't have up here on the mnt. BUT he has been told to gain as much weight as possible so I think he is going to be successful in that effort. JR is still doing great in spirit and humor; physically and emotionally - well, you get the idea!
Chemo is tomorrow. I dread all the moaning and groaning! Mine, not JR's. And it is too bad that some people have such a warped sense of humor that they think it is funny when I turn white and ask for a stretcher when they show their "ports" (artificial holes put in place for when their veins get burned up) or pop their tubing corks or pump liquids through their feeding tubes -- all in sight of everybody. People are constantly exposing private parts - and by that I mean a body part w/ blood or some kind of fluids coming out of it in an unnatural way that I'd as soon not see! These chemo patients have such strength to go through what they do, and I soooo don't want to throw up in a lap or land in a dead faint on IV tubing.
Thank you again for your prayers, cards and concern! They are gratefully accepted and appreciated -- more than you know unless you've had cancer or had a loved one w/ it. We hope and pray your life is filled w/ good health and many blessings.
Grace & peace.
----------------------------------------------
Monday, March 9, 2009, 11:08 PM
Spent first half day in dentist. W/ mouth / throat radiation you have to have all cracks / fixed so they are refilling old teeth and redoing crowns. Can't do any dental during or shortly after radiation.
We were at Radiation clinic till 5:30. That was a downer because the doc insists Jr needs a feeding tube and went on and on about it being such a big cancer on his wind pipe; future fried throat; and so on -- you'd think this was a world record cancer the way he talked!
Tomorrow is chemo all day w/ surgeon on standby in case his throat closes or something and he'll have his own nurse not to leave him all day. I'm staying w/ him too. The chemo is some kind of experimental stuff w/ rat parts in it -- which freaks me out, but Jr is okay w/ it! Jr said he's going to get up from there at the end of the 6 hr session, run around the office in circles and then ask for cheese! (They SAY it is hamster dna, but that's still a rat!)
He watched two Rambo movies to get psyched up for fighting the cancer. He's always been tough and can take pain very well, but grandkids have softened him up so ... after watching First Blood he was ready to do his own cancer surgery, w/ his hunting knife - no sedative. But I finally convinced him to wait for the doctors -- since we've got to pay them anyway.
(This last para. is partly fictionized. The rest is gospel.)
Well, that's all I know today. Tomorrow will be a week since we first heard the "cancer" word in regard to my special husband - seems much longer.
Grace & peace,
e
----------------------------------------------
(Unsure of dates for the following two posts.)
Announcement of cancer --
We were supposed to get the biopsy back on Jr Thurs. but the doctor called this evening. He said the results came back positive for cancer, and it is high priority so they have him set up tomorrow at 11:45 in Lowell for an MRI and another scan on his head and neck.
That's all I know.
We will appreciate your prayers.
Elaine
----------------------------------------------
Yesterday didn't go well w/ chemo. The kind w/ rat parts (one doc said it was mice protein and a nurse said it was hamster dna) gave him an allergic reaction and they had to stop chemo. Since he needs it fast and bad that was not good altho I didn't blame his body for rejecting it. But he needs it so ...
Today he took all 900 ml or cm of the rat part chemo!!!!!!!! That was answered prayer!
Tomorrow they fit him w/ the radiation helmet and began programming for the radiation. Since he has cancer in vocal cords through windpipe and lymph nodes, they will be shooting him from diff directions and the computer does it all so they said it takes hours and hours to program it correctly. And we want it to go to the right places! This is a good thing that treatment is started.
It looks like he will get a feeding tube in his stomach. We'd prefer a miracle.
There are just too many emails and phone calls to respond to right now, but we are so grateful for all the love, concern and prayers! Words can't express! You prayer warriors, you know what to do and thank you for doing it. We feel it!
March 16 update
I have great news! The PET and other scans they did Thurs. are "unofficial" that the cancer is contained in the neck and lymph node area and has not spread to the rest of JR's body!!!!!!
When I called the doctor's offices this morning it was to be told that they'd all left for Spring Break and it would be NEXT wk before they got back and could meet w/ us for the scan results. Their nurses were out too. They said they couldn't give us the news over the phone either which didn't sound promising since we'd gotten the first "cancer" over the phone and the next news that it was "stage 3 and bad, etc...." over the phone. But I proceeded to share w/ 3 different offices this morning how we REALLY didn't feel good about waiting another wk and another wkend to hear if the cancer was spread through his body. And I admit it may have come close to a Roy D. Mercer butt-whooping threat -- but only in a sweet, little ole Christian lady kind of way -- which MAY have inspired two people in the scan-reading department to give me the "unofficial" word.
Of course we are thankful to God and give Him the glory for this wonderful news, and we wanted to share it w/ those who have joined us in prayer about this matter. Our hearts are gladened and rejoice w/ you for your faithfulness in bringing this petition before Jehovah God! Don't stop now. We have a long road to go, and tomorrow at 9:30 is chemo -- again w/ the mice protein.
Speaking of the mice protein they are injecting JR with: We had a mouse in the motor home so I went and bought up WalMart's rat poison and traps, but Jr said since he's been getting the rat parts, he just didn't have the heart to kill them ... said it felt kinda like he was going after a relative or something. I love him and appreciate his feelings, but it didn't keep me from putting out the rat poison.
Grace and Peace
When I called the doctor's offices this morning it was to be told that they'd all left for Spring Break and it would be NEXT wk before they got back and could meet w/ us for the scan results. Their nurses were out too. They said they couldn't give us the news over the phone either which didn't sound promising since we'd gotten the first "cancer" over the phone and the next news that it was "stage 3 and bad, etc...." over the phone. But I proceeded to share w/ 3 different offices this morning how we REALLY didn't feel good about waiting another wk and another wkend to hear if the cancer was spread through his body. And I admit it may have come close to a Roy D. Mercer butt-whooping threat -- but only in a sweet, little ole Christian lady kind of way -- which MAY have inspired two people in the scan-reading department to give me the "unofficial" word.
Of course we are thankful to God and give Him the glory for this wonderful news, and we wanted to share it w/ those who have joined us in prayer about this matter. Our hearts are gladened and rejoice w/ you for your faithfulness in bringing this petition before Jehovah God! Don't stop now. We have a long road to go, and tomorrow at 9:30 is chemo -- again w/ the mice protein.
Speaking of the mice protein they are injecting JR with: We had a mouse in the motor home so I went and bought up WalMart's rat poison and traps, but Jr said since he's been getting the rat parts, he just didn't have the heart to kill them ... said it felt kinda like he was going after a relative or something. I love him and appreciate his feelings, but it didn't keep me from putting out the rat poison.
Grace and Peace
Wednesday, June 10, 2009
Latest -- June 10
The big thing coming up are the follow-up scans set for July 1st to see if cancer is gone or not. The appt. w/ doc to discuss the results were a wk later. It was a surgeon friend who ordered the first scans and he called us on the way home to tell us the bad news -- but we didn't have to wait and worry. We don't like waiting / cruel. Today I got permission from doc to get results by phone following scans on July 1. That's a good thing.
Because Jr is still gagging, coughing, etc. the radiation doc is scheduling him tomorrow w/ oncology ENT and said some tissue may have to be removed surgically. More fun stuff to look forward to. BUT his throat skin is healing up soooo well. He'll never grow hair there, but that's alright. He still can't talk.
Thanks for all the emails and calls. I said I'd play catch-up on the blog so here it is - not much to tell. It's storming - got to go.
Because Jr is still gagging, coughing, etc. the radiation doc is scheduling him tomorrow w/ oncology ENT and said some tissue may have to be removed surgically. More fun stuff to look forward to. BUT his throat skin is healing up soooo well. He'll never grow hair there, but that's alright. He still can't talk.
Thanks for all the emails and calls. I said I'd play catch-up on the blog so here it is - not much to tell. It's storming - got to go.
Sunday, June 7, 2009
More OLD UPDATES...
Not sure about the date on this one...
Okay, I've gotten umpteen calls and emails about a new update, but I'm a little intimidated now (yes, it is possible) because I've found out that some people are forwarding these emails to other people all over the country who are sending it out to other people, etc. Since I'm very pushed for time these days I haven't proofed the updates I sent out because it was just to friends and family who would excuse and understand the spelling and gramatical errors. Also, since I do a little writing, it's embarrassing to know that so many strangers have been reading my illiterate sounding updates. Now I'm hearing from strangers to put them on my email list ...
I did have somebody who was offended about my "making jokes about cancer" and since I don't want to offend anybody, I explained to her sweetly that I don't have the time, inclination or tact to labor over these updates just to please ultra-sensitive people ... so I was removing her from my address book. That's what the delete key is for, folks. I just write it as we live it. If that's not serious enough for some people, hit the delete key.
As of today JR has an infection of the stomach feeding tube which causes some gross probs that you don't want to hear about. We did find out that not all tubes are so big. A friend showed me his and it was a little thing, maybe 2 inches long and skinny. JR's is thick and at least 6 in... long so that it flops around everywhere. Jr thinks they ran out of regular tubing and used part of a water hose for his. So if and when you get one, ask for the little dainty ones.
His neck and collar-bone areas are burned badly from the radiation so that he doesn't like to wear shirts because they rub the bleeding places. I'm glad he didn't have cancer below the waist or he'd be running around bottomless! I took my scissors and altered some of his shirts so that they no longer have collars or upper parts so he basically dresses like a rag man now.
He gags, chokes and gasps quite often from the tumor and swelling caused from the radiation and he isn't able to talk. Eating is limited too. My nights are spent listening to him try to breathe. The docs are giving him extra bags of IV w/ vitamins to keep him hydrated. He did not have a port put in which means they are using his veins for each chemo and IV treatment. He is still having strange and sudden food cravings so I'm kept busy trying to satisfy those, but everything pretty much tastes like cardboard so the dogs are eating better these days. With the food cravings and the nausea he reminds me of a pregnant woman except he doesn't have the hormonal / crying stuff that goes along w/ it which is a real blessing. Have you tried to find chicken gizzards lately?
Some people are telling me that these updates are helping their friends and relatives who have cancer relate. That's nice. Today was the first day of 4 more weeks of daily radiation and weekly chemo. It may sound as though JR is having a tough time, but he is really doing well -- better than most. And yes, his spiritual and emotional state is still very good, but the physical part still has to be endured, well, unless God sends a miracle, which I believe Jr has had in some areas. He has not thrown up yet and that was his main dread. Neither of us are complaining. Daniel was here 2 days last wk and Phaedra and Clyde are always willing to help out - as are their 3 little ones. Living in 4 states in 9 yrs has given us a wide range of friends who are prayer warriors, and they are faithful to pray. We feel the peace that only comes from God. Words are inadaquate to express our appreciation! Thanks and God bless you.
Tuesday, April 7, 2009, 6:58 AM
Jr had feeding tube check-up. That nurse jerked on his hose and reved it up tighter to stop leaking (more information than you wanted?) and they sonogramed his leg for a blood clot but decided it was an edema whatever that is. FYI - chemo can cause blood clots 'cause they suck blood from other body parts / that's what we were told & long trips like we took are dangerous. NOW they tell us.
On to the radiation. It was after 6 pm before we left. We were the last ones leaving the building because Jr's 3 million $$ machine's motor died and they had to put a new one on -- while he lay there in the head / face covering mask so tight he couldn't even talk. After an hr his blood pressure shot up. His face and neck are still broke out from the chemo so that makes his skin tender for the radiation but he shouldn't get burned until next week - we were told. He will do this 5 days a wk for 7 wks. They said the neck skin is the tenderest and the throat is the toughest for radiation.
Unfortunately a man was in there sitting in his gown beside Jr waiting his turn whose neck was burned open - w/ holes. Jr asked him how long he'd been taking radiation (7 wks) and then felt bad because it hurt him to talk and he tried. (I know this was his 7th wk because I asked the nurse about him.)
We also met w/ the radiation doctor who mentioned the same thing that the Houston doc did about the cancer having eaten into the cartilege except he went into more detail about the eaten away part. It's gone for good so we're hoping it is not a part he will miss a lot! We were told it has damaged his hearing. I've told JR not to repeat anything he THINKS he hears. Also, the doc said that the cancer in the lymph nodes were big clumps enough to get some good glows in the scans so they are hitting that hard w/ radiation too. Well, folks, we still need a miracle so keep praying. Jr and I are both feeling the love and peace of God. People keep telling us we need to have breakdown cries to help us through this so I asked Jr if he wanted to, but he said he didn't feel the need. Then he asked me if I felt the need, but I don't either. Though if he gets holes in his neck, we may have some breakdown cries then. (I've never heard the term before, but it is kind of catchy.)
I got my biopsy results and looks like JR and I won't be taking chemo together. That's a big praise! There's other things we can enjoy doing together.
Thanks for all the cards, $$$, ham, angel, turkey, cake, calls, scriptures, books, etc., but esp for the prayers!
Peace & grace,
e
Okay, I've gotten umpteen calls and emails about a new update, but I'm a little intimidated now (yes, it is possible) because I've found out that some people are forwarding these emails to other people all over the country who are sending it out to other people, etc. Since I'm very pushed for time these days I haven't proofed the updates I sent out because it was just to friends and family who would excuse and understand the spelling and gramatical errors. Also, since I do a little writing, it's embarrassing to know that so many strangers have been reading my illiterate sounding updates. Now I'm hearing from strangers to put them on my email list ...
I did have somebody who was offended about my "making jokes about cancer" and since I don't want to offend anybody, I explained to her sweetly that I don't have the time, inclination or tact to labor over these updates just to please ultra-sensitive people ... so I was removing her from my address book. That's what the delete key is for, folks. I just write it as we live it. If that's not serious enough for some people, hit the delete key.
As of today JR has an infection of the stomach feeding tube which causes some gross probs that you don't want to hear about. We did find out that not all tubes are so big. A friend showed me his and it was a little thing, maybe 2 inches long and skinny. JR's is thick and at least 6 in... long so that it flops around everywhere. Jr thinks they ran out of regular tubing and used part of a water hose for his. So if and when you get one, ask for the little dainty ones.
His neck and collar-bone areas are burned badly from the radiation so that he doesn't like to wear shirts because they rub the bleeding places. I'm glad he didn't have cancer below the waist or he'd be running around bottomless! I took my scissors and altered some of his shirts so that they no longer have collars or upper parts so he basically dresses like a rag man now.
He gags, chokes and gasps quite often from the tumor and swelling caused from the radiation and he isn't able to talk. Eating is limited too. My nights are spent listening to him try to breathe. The docs are giving him extra bags of IV w/ vitamins to keep him hydrated. He did not have a port put in which means they are using his veins for each chemo and IV treatment. He is still having strange and sudden food cravings so I'm kept busy trying to satisfy those, but everything pretty much tastes like cardboard so the dogs are eating better these days. With the food cravings and the nausea he reminds me of a pregnant woman except he doesn't have the hormonal / crying stuff that goes along w/ it which is a real blessing. Have you tried to find chicken gizzards lately?
Some people are telling me that these updates are helping their friends and relatives who have cancer relate. That's nice. Today was the first day of 4 more weeks of daily radiation and weekly chemo. It may sound as though JR is having a tough time, but he is really doing well -- better than most. And yes, his spiritual and emotional state is still very good, but the physical part still has to be endured, well, unless God sends a miracle, which I believe Jr has had in some areas. He has not thrown up yet and that was his main dread. Neither of us are complaining. Daniel was here 2 days last wk and Phaedra and Clyde are always willing to help out - as are their 3 little ones. Living in 4 states in 9 yrs has given us a wide range of friends who are prayer warriors, and they are faithful to pray. We feel the peace that only comes from God. Words are inadaquate to express our appreciation! Thanks and God bless you.
Tuesday, April 7, 2009, 6:58 AM
Jr had feeding tube check-up. That nurse jerked on his hose and reved it up tighter to stop leaking (more information than you wanted?) and they sonogramed his leg for a blood clot but decided it was an edema whatever that is. FYI - chemo can cause blood clots 'cause they suck blood from other body parts / that's what we were told & long trips like we took are dangerous. NOW they tell us.
On to the radiation. It was after 6 pm before we left. We were the last ones leaving the building because Jr's 3 million $$ machine's motor died and they had to put a new one on -- while he lay there in the head / face covering mask so tight he couldn't even talk. After an hr his blood pressure shot up. His face and neck are still broke out from the chemo so that makes his skin tender for the radiation but he shouldn't get burned until next week - we were told. He will do this 5 days a wk for 7 wks. They said the neck skin is the tenderest and the throat is the toughest for radiation.
Unfortunately a man was in there sitting in his gown beside Jr waiting his turn whose neck was burned open - w/ holes. Jr asked him how long he'd been taking radiation (7 wks) and then felt bad because it hurt him to talk and he tried. (I know this was his 7th wk because I asked the nurse about him.)
We also met w/ the radiation doctor who mentioned the same thing that the Houston doc did about the cancer having eaten into the cartilege except he went into more detail about the eaten away part. It's gone for good so we're hoping it is not a part he will miss a lot! We were told it has damaged his hearing. I've told JR not to repeat anything he THINKS he hears. Also, the doc said that the cancer in the lymph nodes were big clumps enough to get some good glows in the scans so they are hitting that hard w/ radiation too. Well, folks, we still need a miracle so keep praying. Jr and I are both feeling the love and peace of God. People keep telling us we need to have breakdown cries to help us through this so I asked Jr if he wanted to, but he said he didn't feel the need. Then he asked me if I felt the need, but I don't either. Though if he gets holes in his neck, we may have some breakdown cries then. (I've never heard the term before, but it is kind of catchy.)
I got my biopsy results and looks like JR and I won't be taking chemo together. That's a big praise! There's other things we can enjoy doing together.
Thanks for all the cards, $$$, ham, angel, turkey, cake, calls, scriptures, books, etc., but esp for the prayers!
Peace & grace,
e
Saturday, June 6, 2009
Today was a good day!
Jr had a good day today! The feeding tube is gone and his neck / throat is healing inside and out. He is recovering some of his strength too. He had a load of dirt brought in and Phaedra / Clyde fam came over and put the pool up w/ Jr's supervision! Clyde used the power washer to clean it and P sucked the dirty stuff out w/ a water vac. He had to come in and nap every once in a while and then he'd go do something else. We went down to the lake in the Kabota. Kinsley is staying the night and her "Papa" let her drive -- made me want to walk! The chemo and radiation suck the energy right out of people, but he is making tremendous strides each day so for those who are going through this (and several of our friends are); there is an end to the treatments! One day at a time! If you try to think of the weeks of radiation it can bring you down and cause some people to be depressed. Face each day as it comes and determine to get through THAT day - try not to worry about the ones following. What will be, will be - worrying won't make it any better and will bring you down emotionally and spiritually. Just a little advice from experience. Jr is planning to go to SS and church tomorrow. Hopefully he can stay awake more this Sunday!
Friday, June 5, 2009
OLD UPDATES
Many people have asked for the first updates sent by e-mail. This post contains those e-mails.
Date: Monday, May 25, 2009, 10:42 PM
JR finished chemo (14 wks) and radiation (7 wks/ daily). We thought we would have a celebration, but he was in too much pain. Of course it was a great event / last day. The radiation people gave us the hated hood (covered head, neck and upper shoulders) to take home. When Jr feels better we are going to use it for target practice! It carries his blood-stains. Every day when they took it off him, they would spray it w/ water to try to soak his burned skin loose, but would inevitably have to pull his skin off to remove the hood. He told me this morning that he didn't think he could have stood one more day of that. It had to be very bad for him to say that. Before they started I told them he was tough and would endure (throat radiation is the worse they said because of the thin, sensitive skin), and at the end they told me that now the whole staff knew it to be true. They said it was a pleasure to work w/ him. He didn't fuss and cry; just endured.
Sometimes we would hear the nurses talking about people who wouldn't come in for treatments. We didn't understand at first, but over the past wks we learned that it is because the pain and sickness can be so bad that many people won't or can't finish them. Over and over, we've heard, "Cancer can kill you, but the treatments can make you want to die." Jr never expressed that, but there were plenty who did / do.
Everybody wants to know when we will know if they got the cancer and if he will get his voice back. It will be July 1 for follow-up scans. It has truly been a "One day at a time" thing. Now we will start thinking about what's next. We have an appt. w/ chemo oncology doc tomorrow. But it will be a while before Jr is healed enough from the treatment to consider a follow-up surgery that 2 doctors have mentioned.
We can not thank everybody enough for your concern and prayerful support. I hesitate to name people because the list is too long. Our pastor, his wife and church family (here) have provided food and have offered every kind of help and support possible, esp. prayers. Others have given their time like Ben and Elaine who cleaned, cooked & tilled my pitiful garden; Daniel has swapped shifts to see doctors w/ his dad; Bonnie, Donnell & Jeni have driven up here to help me plus keep P's kids; Vickie took a week off work to help (in addition to cost of flight); Steve & Blake have been patient w/ my busy schedule (5 - 8 hrs a day for treatments - including driving time); David & Glenda drove 7 hrs so he could take Jr to treatments so I could write; ... there's just too many people to thank!
Phaedra and Clyde have been at our beck & call throughout, though we've tried not to call too many times. There is nothing they have not "joyfully" volunteered to do for us even though 3 little ones and 2 jobs keep them plenty busy. And when so many are repelled by the feeding tube, P&C's little darlings (or he calls them the "wild bunch") compete to flush "papa's" tube, and they have been so careful w/ his "bobo's" and pray faithfully for him aloud.
People tell me that they learn from these updates. It has been a learning experience for us too. It has helped having visitors. Obviously we like our solitude or we wouldn't be living where we do, but it is kinda scary being here on the mountain far from a hospital when Jr is choking & strangling (which he does often). People always ask, "How can you have so much company?" One reason is that it is comforting to me because though Daniel and a doctor showed me how to do a trake, and I have a kit w/ scalpel and tubing -- the thought that I'd have to cut Jr's throat, esp. right next to his jugular, gives me the spookies! (He's not altogether comfortable w/ the idea either.)
Our visitors have learned that I don't have to energy to "host" like I used to, and the dinners may be strange depending on what Jr feels like, but this is a strange time. When David and Glenda were here, Jr wanted fried and baked fish w/ Lima beans so that's what I fixed. They graciously acted like that was a tasty menu.
The battle is not over, but please know how much we appreciate you. Without the peace and strength of God I wouldn't have made it through the past months without becoming a blithering basket case & JR may not have had the strength to endure what he has. A day has not passed that he hasn't received at least one card, usually more. Knowing that people are praying and care is uplifting. This is long, but I haven't sent anything in a while and am getting lots of emails and calls fussing because they haven't heard so ...
On Jr's final radiation day we had a real adult slumber party (following Phaedra's surgery Wed.). My mother, Jr's mother, his sister, Ben, Elaine, Donnell and Ranny were here and Daniel, Steph & Hagen came Sat night.
Thank you and keep praying PBC, Floy Mae, CO and TN friends, cousins, etc.....
God bless & keep you healthy!
Monday, May 18, 2009, 6:54 PM
We met w/ the radiation doctor today and found out that the pain medicine had "Take 1 teaspoon every 4 hrs" when it should have said, "Take 4 to 5 teaspoons every 4 hrs" so that explains why he's been in such pain. This pic was taken after 2 wks of new cream that is holding everything together better. It looks better in this pic than real life though. His beard hasn't grown any in wks. He quit shaving because of the chemo rash. His back is covered w/ the bumps still, and there's enough facial bumps that he can't shave yet, but he's just glad his nose is not still swelled 3 times as big and colored purple.
JR has been sick at his stomach, but the doc told us today it was because of stuff going on inside his throat (I'm giving you the cleaned up version because if I tell you exactly what the doctor said you'd lose your last meal! I know because I did.)
LAST chemo tomorrow!!!! Friday is the last radiation day!!!!! Then maybe he'll get hisvoice back pretty soon. Right now he claps his hands when he wants me. He claps a lot. We also have this code thing going. Since all the noises he makes are gasps, choke and gag, I tell him to gag once for "yes" and gasp, gag for "no", etc. Actually he did have a couple days last wk where he could talk kinda, but he won't go to a restaurant anymore because people stare at him like he's spastic or retarded because of the weird gagging noises he makes. (I know that is not the PC terms to use, but it is all I know to communicate what's going on so please don't email me w/ the righteous indignation; just delete it and forgive me. I'm in a hurry here. Jr will begin clapping any second.) And, oops there goes the clapping ... gotta go.
Friday, May 8, 2009, 5:58 PM
I've been asked to send these updates so people can give reports to their churches / SS classes on Sunday so ... you've probably heard people say, "God works in mysterious ways", well one of His ways to answer prayer for JR is to just have him sleep through a lot of the pain! He sleeps through hours of chemo and even went to sleep yesterday at radiation where his head and face (down to his collar bone) is encompassed in a hood that is hooked to a machine holding his head at such an angle that it is difficult for him to breath and swallow. It takes between 20 and 30 min. average for them to get everything lined up, etc. ANd yet he went to sleep!
Yesterday there was a man (and his family) getting chemo for the first time and of course they were all scared, and the man was sitting beside Jr who slept for 3 hrs. straight. During that time I was reassuring the man and his family that chemo was doable. It helped them to see JR sleeping because they said it couldn't be too bad if he could sleep so well through it -- plus when it is somebody's last day at chemo they ring a big bell and everybody applauds! Jr slept through 4 "graduations" w/ bells and applause!
Please thank your friends and churches for their prayers! God is hearing and answering. Though Jr's neck and below is burned up several skin layers deep, and though they say most people are on morphine at this point he is not even taking the prescription pain killer he was prescribed. He is bandaged up like a mummy w/ special burn salves, etc., can't talk and gasps, gags and chokes, but he's doing GREAT!! That feeding tube all the docs said he would need because only a very few could take it and continue to swallow -- he's still eating under his own power. Admittedly not the same foods he used to eat. He's also still having the pregnancy -type cravings: Beenie Weenies, boiled eggs, cheetoes, hot tamales, etc. this week. Phaedra hurries to the store and drives all the way out here anytime he tells her about his cravings and Daniel brought frozen fish and crayfish up when he came.
After today's radiation, we will have only 10 days left (May 22) of 7 wks radiation and 12 wks of chemo. He is only using the feeding tube enough to keep it cleared.
Yesterday was National Day of Prayer and though he is VERY heat / sun - sensitive, we delayed his treatments so we could attend the NDofP at the town square. As you probably heard, Obama refused to attend or even recognize the Day -- even though we have troops in harm's way who need prayer. Dr. James Dobson, a respected man of our time, said yesterday that this was the first time in decades that one of the president's cabinet did not attend their day of prayer ceremonies. He said the White House did not even acknowledge any of their emails and calls. JR was determined to participate in the day's ceremonies because if our nation ever needed God's help it is NOW... he couldn't sing or talk, but he was there in his mummy bandages and pimp hat.
So please share our thanks for all your prayers. We feel them! I feel so sorry for people who don't have prayer-warriors willing to take the time and effort to lift them up. Again, thanks for all the cards, calls, emails, visits, etc. We appreciate YOU. To God be the glory!
Date: Monday, May 25, 2009, 10:42 PM
JR finished chemo (14 wks) and radiation (7 wks/ daily). We thought we would have a celebration, but he was in too much pain. Of course it was a great event / last day. The radiation people gave us the hated hood (covered head, neck and upper shoulders) to take home. When Jr feels better we are going to use it for target practice! It carries his blood-stains. Every day when they took it off him, they would spray it w/ water to try to soak his burned skin loose, but would inevitably have to pull his skin off to remove the hood. He told me this morning that he didn't think he could have stood one more day of that. It had to be very bad for him to say that. Before they started I told them he was tough and would endure (throat radiation is the worse they said because of the thin, sensitive skin), and at the end they told me that now the whole staff knew it to be true. They said it was a pleasure to work w/ him. He didn't fuss and cry; just endured.
Sometimes we would hear the nurses talking about people who wouldn't come in for treatments. We didn't understand at first, but over the past wks we learned that it is because the pain and sickness can be so bad that many people won't or can't finish them. Over and over, we've heard, "Cancer can kill you, but the treatments can make you want to die." Jr never expressed that, but there were plenty who did / do.
Everybody wants to know when we will know if they got the cancer and if he will get his voice back. It will be July 1 for follow-up scans. It has truly been a "One day at a time" thing. Now we will start thinking about what's next. We have an appt. w/ chemo oncology doc tomorrow. But it will be a while before Jr is healed enough from the treatment to consider a follow-up surgery that 2 doctors have mentioned.
We can not thank everybody enough for your concern and prayerful support. I hesitate to name people because the list is too long. Our pastor, his wife and church family (here) have provided food and have offered every kind of help and support possible, esp. prayers. Others have given their time like Ben and Elaine who cleaned, cooked & tilled my pitiful garden; Daniel has swapped shifts to see doctors w/ his dad; Bonnie, Donnell & Jeni have driven up here to help me plus keep P's kids; Vickie took a week off work to help (in addition to cost of flight); Steve & Blake have been patient w/ my busy schedule (5 - 8 hrs a day for treatments - including driving time); David & Glenda drove 7 hrs so he could take Jr to treatments so I could write; ... there's just too many people to thank!
Phaedra and Clyde have been at our beck & call throughout, though we've tried not to call too many times. There is nothing they have not "joyfully" volunteered to do for us even though 3 little ones and 2 jobs keep them plenty busy. And when so many are repelled by the feeding tube, P&C's little darlings (or he calls them the "wild bunch") compete to flush "papa's" tube, and they have been so careful w/ his "bobo's" and pray faithfully for him aloud.
People tell me that they learn from these updates. It has been a learning experience for us too. It has helped having visitors. Obviously we like our solitude or we wouldn't be living where we do, but it is kinda scary being here on the mountain far from a hospital when Jr is choking & strangling (which he does often). People always ask, "How can you have so much company?" One reason is that it is comforting to me because though Daniel and a doctor showed me how to do a trake, and I have a kit w/ scalpel and tubing -- the thought that I'd have to cut Jr's throat, esp. right next to his jugular, gives me the spookies! (He's not altogether comfortable w/ the idea either.)
Our visitors have learned that I don't have to energy to "host" like I used to, and the dinners may be strange depending on what Jr feels like, but this is a strange time. When David and Glenda were here, Jr wanted fried and baked fish w/ Lima beans so that's what I fixed. They graciously acted like that was a tasty menu.
The battle is not over, but please know how much we appreciate you. Without the peace and strength of God I wouldn't have made it through the past months without becoming a blithering basket case & JR may not have had the strength to endure what he has. A day has not passed that he hasn't received at least one card, usually more. Knowing that people are praying and care is uplifting. This is long, but I haven't sent anything in a while and am getting lots of emails and calls fussing because they haven't heard so ...
On Jr's final radiation day we had a real adult slumber party (following Phaedra's surgery Wed.). My mother, Jr's mother, his sister, Ben, Elaine, Donnell and Ranny were here and Daniel, Steph & Hagen came Sat night.
Thank you and keep praying PBC, Floy Mae, CO and TN friends, cousins, etc.....
God bless & keep you healthy!
Monday, May 18, 2009, 6:54 PM
We met w/ the radiation doctor today and found out that the pain medicine had "Take 1 teaspoon every 4 hrs" when it should have said, "Take 4 to 5 teaspoons every 4 hrs" so that explains why he's been in such pain. This pic was taken after 2 wks of new cream that is holding everything together better. It looks better in this pic than real life though. His beard hasn't grown any in wks. He quit shaving because of the chemo rash. His back is covered w/ the bumps still, and there's enough facial bumps that he can't shave yet, but he's just glad his nose is not still swelled 3 times as big and colored purple.
JR has been sick at his stomach, but the doc told us today it was because of stuff going on inside his throat (I'm giving you the cleaned up version because if I tell you exactly what the doctor said you'd lose your last meal! I know because I did.)
LAST chemo tomorrow!!!! Friday is the last radiation day!!!!! Then maybe he'll get hisvoice back pretty soon. Right now he claps his hands when he wants me. He claps a lot. We also have this code thing going. Since all the noises he makes are gasps, choke and gag, I tell him to gag once for "yes" and gasp, gag for "no", etc. Actually he did have a couple days last wk where he could talk kinda, but he won't go to a restaurant anymore because people stare at him like he's spastic or retarded because of the weird gagging noises he makes. (I know that is not the PC terms to use, but it is all I know to communicate what's going on so please don't email me w/ the righteous indignation; just delete it and forgive me. I'm in a hurry here. Jr will begin clapping any second.) And, oops there goes the clapping ... gotta go.
Friday, May 8, 2009, 5:58 PM
I've been asked to send these updates so people can give reports to their churches / SS classes on Sunday so ... you've probably heard people say, "God works in mysterious ways", well one of His ways to answer prayer for JR is to just have him sleep through a lot of the pain! He sleeps through hours of chemo and even went to sleep yesterday at radiation where his head and face (down to his collar bone) is encompassed in a hood that is hooked to a machine holding his head at such an angle that it is difficult for him to breath and swallow. It takes between 20 and 30 min. average for them to get everything lined up, etc. ANd yet he went to sleep!
Yesterday there was a man (and his family) getting chemo for the first time and of course they were all scared, and the man was sitting beside Jr who slept for 3 hrs. straight. During that time I was reassuring the man and his family that chemo was doable. It helped them to see JR sleeping because they said it couldn't be too bad if he could sleep so well through it -- plus when it is somebody's last day at chemo they ring a big bell and everybody applauds! Jr slept through 4 "graduations" w/ bells and applause!
Please thank your friends and churches for their prayers! God is hearing and answering. Though Jr's neck and below is burned up several skin layers deep, and though they say most people are on morphine at this point he is not even taking the prescription pain killer he was prescribed. He is bandaged up like a mummy w/ special burn salves, etc., can't talk and gasps, gags and chokes, but he's doing GREAT!! That feeding tube all the docs said he would need because only a very few could take it and continue to swallow -- he's still eating under his own power. Admittedly not the same foods he used to eat. He's also still having the pregnancy -type cravings: Beenie Weenies, boiled eggs, cheetoes, hot tamales, etc. this week. Phaedra hurries to the store and drives all the way out here anytime he tells her about his cravings and Daniel brought frozen fish and crayfish up when he came.
After today's radiation, we will have only 10 days left (May 22) of 7 wks radiation and 12 wks of chemo. He is only using the feeding tube enough to keep it cleared.
Yesterday was National Day of Prayer and though he is VERY heat / sun - sensitive, we delayed his treatments so we could attend the NDofP at the town square. As you probably heard, Obama refused to attend or even recognize the Day -- even though we have troops in harm's way who need prayer. Dr. James Dobson, a respected man of our time, said yesterday that this was the first time in decades that one of the president's cabinet did not attend their day of prayer ceremonies. He said the White House did not even acknowledge any of their emails and calls. JR was determined to participate in the day's ceremonies because if our nation ever needed God's help it is NOW... he couldn't sing or talk, but he was there in his mummy bandages and pimp hat.
So please share our thanks for all your prayers. We feel them! I feel so sorry for people who don't have prayer-warriors willing to take the time and effort to lift them up. Again, thanks for all the cards, calls, emails, visits, etc. We appreciate YOU. To God be the glory!
Tube gone!
The feeding tube is GONE! Hallelujah!!!
Phaedra and her three came w/ us because the kids wanted to "help pull it out." Jr decided at the last minute that he would let the doctor do it, but they were all gathered 'round watching. Makenna had her fingers in her ears just in case Papa hollared. Kinsley jumped in with (to Dr. Kendrick), "You're going to do that without giving him some medicine?" After that she covered her eyes but kept her fingers spread apart to watch. Colton just watched. Me, I was cowering in the corner.
When doc pulled it out, he let everybody see the thingy on the end that kept it in his stomach ... oh, happy day. Then he put a pad on it and said the hole would close up in a few days. In the meantime we are hoping it doesn't spring a leak. But it is done. When he was diagnosed w/ cancer he weighted 235 and is now down to 212 so it is showing, esp. in his face, but he didn't began losing weight until the last 3 wks so that is good.
Phaedra and her three came w/ us because the kids wanted to "help pull it out." Jr decided at the last minute that he would let the doctor do it, but they were all gathered 'round watching. Makenna had her fingers in her ears just in case Papa hollared. Kinsley jumped in with (to Dr. Kendrick), "You're going to do that without giving him some medicine?" After that she covered her eyes but kept her fingers spread apart to watch. Colton just watched. Me, I was cowering in the corner.
When doc pulled it out, he let everybody see the thingy on the end that kept it in his stomach ... oh, happy day. Then he put a pad on it and said the hole would close up in a few days. In the meantime we are hoping it doesn't spring a leak. But it is done. When he was diagnosed w/ cancer he weighted 235 and is now down to 212 so it is showing, esp. in his face, but he didn't began losing weight until the last 3 wks so that is good.
How to post comments? I don't know.
People say they are coming to the blog and can't post comments and want to know how. I don't know how -- this is new to me, and new stuff comes slowly the older I get. If anybody knows how then maybe they can post directions in the "comment" area. Nina sent me directions in an email, but I also can't get it out of there to put here. The nursing home is probably the next stop!
How radiation & dining out clashes!
I've been asked to explain why we stopped dining out in restaurants when we were gone all day w/ 90 min. drive to and from chemo / radiation. It was because as the radiation burned more of the inside of his throat, swallowing came with a lot of gagging, choking, gasping and strangling. More people were watching Jr than were enjoying their own food. Now that we are 2 wks out from the end of radiation, we still have not been to a restaurant because he still can't eat without a lot of sound effects -- AND you never know if the food he does swallow will come up or go down.
It was important to Jr for personal reasons and physical for him to keep swallowing instead of relying on the stomach feeding tube that the doctors talked him into getting. It helps the throat muscles recover better if they are used throughout the ordeal, but as Jim Rolland said, "That feeding tube diminishes a man's masculinity." He may be right. Regardless, Jr has kept on eating the normal way (well, not totally normally), though he did end up using the tube for the liquid pain medicine the doctors prescribed.
But today the feeding tube is going to be removed! That's a big Hallelujah!!!!
It was important to Jr for personal reasons and physical for him to keep swallowing instead of relying on the stomach feeding tube that the doctors talked him into getting. It helps the throat muscles recover better if they are used throughout the ordeal, but as Jim Rolland said, "That feeding tube diminishes a man's masculinity." He may be right. Regardless, Jr has kept on eating the normal way (well, not totally normally), though he did end up using the tube for the liquid pain medicine the doctors prescribed.
But today the feeding tube is going to be removed! That's a big Hallelujah!!!!
Tuesday, June 2, 2009
We went to Kinsley's K-5 graduation tonight, but Jr had to get up and leave. As soon as she got her diploma I went to check on him and found him in the car, sick, so we came on home. We had to stop several times for him to throw-up so prob tomorrow we will go back to chemo for IV fluids. Clyde offered to stick him and administer fluids, but after all the heaving Jr just wanted to be still and sleep - which he is doing now.
July 1 is set for follow-up scans to see if the cancer is still there.
Jr did go to SS and church day before yesterday -- for the first time in several wks. He can only whisper and dozed off a few times in church, but was glad he went. When we got in the car to come home he was asleep and snoring before I got the seat belt on. (I was driving -- not him.)
His taste buds are still dead along w/ saliva glands - all of which may be permanent; we'll see. When the doctor told him his voice would change -- maybe permanently, Jr said he didn't care about that as long as his voice didn't get high! For a while he sounded like Wolf Man Jack, but now it is just a whisper.
July 1 is set for follow-up scans to see if the cancer is still there.
Jr did go to SS and church day before yesterday -- for the first time in several wks. He can only whisper and dozed off a few times in church, but was glad he went. When we got in the car to come home he was asleep and snoring before I got the seat belt on. (I was driving -- not him.)
His taste buds are still dead along w/ saliva glands - all of which may be permanent; we'll see. When the doctor told him his voice would change -- maybe permanently, Jr said he didn't care about that as long as his voice didn't get high! For a while he sounded like Wolf Man Jack, but now it is just a whisper.
Saturday, May 30, 2009
Subscribe to:
Posts (Atom)