Dave wrote this for us and he said it all so much better than I would have. Enjoy!
I have had many opportunities to count my blessings during the past few weeks. Strangely, I did not have to look very hard to find an overwhelming number of blessings, even while confined to a hospital, connected to various tubes and devices, recovering from surgery digesting the news that I had cancer and violently hiccupping.
I thanked God over and over and over again for the blessings as they came to mind. Among them were the many friends, relatives, church members and even a few people I did not know who visited me in the hospital. There was also my amazing wife and a new appreciation I gained for her love and devotion to me during the whole experience. I made a vow to stay with her through sickness and health eight years ago. She made the same vow to me. I learned what that meant during my hospital stay. She. Would. Not. Leave. Me. Thank God. I am extremely blessed to have such a dedicated partner and I am better for having learned of her dedication that I so very often take for granted.
Perhaps the thing I am most thankful for is that I have this cancer and not any other member of my household. I cannot imagine myself in Amanda’s role as caretaker and supporter. I had the easy part of all of this. I was told I have a disease, cut open, stitched back together and told to get lots of rest. Amanda was the one left to sit in hospital waiting rooms, call the family together, talk to the doctors, fill me in on things I missed while under the influence of heavy narcotics and sit by my side at the hospital for days on end all while worrying about our two children and wondering what the future would bring for our family. Once at home, Amanda shouldered the large majority of the household chores for several days, kept the kids fed, bathed and entertained and made sure I was properly encouraged, medicated and attended to while I laid around the house, watched television and slept. She has had the hard part of all of this and I am extremely blessed that I am the one who is “sick” because I don’t think I could have handled things if it was Amanda.
But I would have. Somehow and some way, I could have dealt with Amanda being sick. I would in no way have been the champion that she has been to me, but I would have muddled through, with much more help from family and friends than she required, and survived.
The thought I cannot imagine is that of Ella or Luke being diagnosed with cancer and forced to undergo medical treatment and hospitalization. This is the greatest blessing I have encountered through my experiences of the past four weeks. I thank God multiple times each day that I am the one with the illness and not my children. I can deal with pain, surgery, giving blood and bone marrow, taking treatments and whatever else may come my way. Let me hurt every day the rest of my life if I don’t have to see pain, hurt and fear on the faces of my two precious babies. Thank you God that they are well. I don’t know how I would make it if they were not.
But many parents do. There are many who have to experience their children being diagnosed with cancer and watch them endure the pains and fears associated with the treatments and the disease itself each and every day. And they are all much stronger than I ever want to become.
Last year we participated in a Trike-a-Thon through Ella’s school to raise money for St. Jude Children's Research Hospital. We enjoyed the experience and Ella had a great time on her tricycle. We were amazed at the generosity of our family and friends in donating to this cause. Amanda asked today if we should participate in raising money for the event again this year, considering all that we have going on in our lives right now and all of the assistance we have already received during the past month. We absolutely should and will. We have the tremendous blessing of not having to know what the families serviced by St. Jude live through on a daily basis. The least we can do is contribute to the cause. Thank you God that my kids are healthy and well. I don’t know how I would make it if they were not.
So, as we did last year, we have again set up a fundraising page for Ella’s Trike-A-Thon and would appreciate any contributions you would like to make: EGR's Trike-a-thon page. Thank you for the prayers and support you have given me during the past days. I am going to be fine. I am blessed beyond all imagination and I feel that we should do what we can to pass it along.
As always, please only give as your heart moves. If this doesn't interest you, please do not feel obligated to donate. The Trike-a-thon takes place on April 13th, so we have until then to see how much money we can raise. Thanks in advance!
Wednesday, March 28, 2012
Friday, March 23, 2012
Sweet Answered Prayer!
Dave talked to the oncology nurse this afternoon and she relayed the message that his bone marrow came back normal, his heart function is normal, his PET scan shows "minimal disease," and they want him to start chemotherapy next Tuesday! I don't exactly know what "minimal disease" means, but we'll take it.
He still has to have his port put in, and that is scheduled for the end of next week, so they might actually start the chemo a week later. We'll find out about that on Monday.
Thank you, thank you, thank you for the prayers! Please keep them coming; we know the treatment isn't going to be a cakewalk. But for now, I'm squealy excited - spontaneous, uncontrolled squealing bursting out of my body in fits of joy. It's like new car squealing, but more. And better.
He still has to have his port put in, and that is scheduled for the end of next week, so they might actually start the chemo a week later. We'll find out about that on Monday.
Thank you, thank you, thank you for the prayers! Please keep them coming; we know the treatment isn't going to be a cakewalk. But for now, I'm squealy excited - spontaneous, uncontrolled squealing bursting out of my body in fits of joy. It's like new car squealing, but more. And better.
"Make a joyful noise unto the LORD, all ye lands." - Psalm 100:1
Thursday, March 22, 2012
I have a confession.
I have an inappropriate sense of humor. I laugh at things that most people probably find offensive or, well, inappropriate. Dave is usually on my wavelength - either laughing with me or making me laugh at completely inappropriate times. Like the time we were at a wedding and, during the middle of the vows when the preacher asked, "What token do you bring...?", Dave turned to me and whispered, "The fatted calf." I was laughing, quietly, so hard that tears were running down my face with the effort of containing it. People were turning around to look. Now of course, he doesn't even have to say anything in the middle of a wedding ceremony, he can just look at me knowingly and I'll start laughing.
I laugh because it's fun and because sometimes it's either that or fall apart. And who wants to do that? So it's not at all surprising to me that in the middle of our most serious personal situation to date, I find myself laughing at the most inappropriate things. Namely, Dave.
He's mostly with me, but I occasionally hit a soft spot and realize I've gone too far and need to take it easy on him. Like when I received a chat from a friend of ours telling me to take a close up of his eyebrows because I probably wouldn't see them for a while after he starts chemo. I found that hilarious, mainly because it hadn't occurred to me that he'd lose his eyebrows, too, and I laughed out loud. When I told Dave about it, he just wasn't very amused. (I had an elaborate plan to take before and after pictures of his eyebrows and write a post about them, but I don't think he's going to let me. Party pooper.)
But just a little while ago, he completely exploited his recent, dramatic weight loss to make me laugh and laugh. I was making fun of the shorts he was wearing because they were all bunched up when he tied them on his waist with his belt. He changed to another pair and said, "These aren't much better. Look at this." Then he proceeded to perform a hula routine that jiggled those shorts all the way to the floor. He thought it was funny, too, so I was safe that time.
Sure, it will suck for him to lose all of his hair, but it's just hair. It will grow back. Sure, the reason for the weight loss sucks, but he's presently thrilled to be able to eat whatever he wants and not gain weight. Why not laugh? It's certainly more fun than being depressed over it.
My point is, I have an inappropriate sense of humor and you are going to see it here about chemo and cancer and all manner of other serious things. If it offends you, well, as my Grandma used to say, "I hate it."
I laugh because it's fun and because sometimes it's either that or fall apart. And who wants to do that? So it's not at all surprising to me that in the middle of our most serious personal situation to date, I find myself laughing at the most inappropriate things. Namely, Dave.
He's mostly with me, but I occasionally hit a soft spot and realize I've gone too far and need to take it easy on him. Like when I received a chat from a friend of ours telling me to take a close up of his eyebrows because I probably wouldn't see them for a while after he starts chemo. I found that hilarious, mainly because it hadn't occurred to me that he'd lose his eyebrows, too, and I laughed out loud. When I told Dave about it, he just wasn't very amused. (I had an elaborate plan to take before and after pictures of his eyebrows and write a post about them, but I don't think he's going to let me. Party pooper.)
But just a little while ago, he completely exploited his recent, dramatic weight loss to make me laugh and laugh. I was making fun of the shorts he was wearing because they were all bunched up when he tied them on his waist with his belt. He changed to another pair and said, "These aren't much better. Look at this." Then he proceeded to perform a hula routine that jiggled those shorts all the way to the floor. He thought it was funny, too, so I was safe that time.
Sure, it will suck for him to lose all of his hair, but it's just hair. It will grow back. Sure, the reason for the weight loss sucks, but he's presently thrilled to be able to eat whatever he wants and not gain weight. Why not laugh? It's certainly more fun than being depressed over it.
My point is, I have an inappropriate sense of humor and you are going to see it here about chemo and cancer and all manner of other serious things. If it offends you, well, as my Grandma used to say, "I hate it."
Monday, March 19, 2012
The Twos Got Terrible Over the Weekend
A few times over the weekend I found myself thinking, "When did my sweet baby boy turn into this holy terror?"
Oh my mercy. Luke celebrated his 19th birthmonthday with a record breaking tantrum followed by an Incident with a block and his sister's head.
After church and lunch yesterday, we took the kids to Tractor Supply in hopes of seeing the baby chicks and ducklings. It really wasn't good timing for Luke as he was already starting to fall asleep in the car, but we did it because we knew they would love the fluffy babies. We were sadly disappointed to find them sold out, so we didn't get to see the babies and Luke was in such a state that things were scaring him. Those little faces that you stick on trees? Terrifying. The stuffed chickens? Scream inducing. We made our way out of there quickly, but we stopped at the front of the store where they have little bins of things you need. There was a ball. He grabbed it and talked about it for a few minutes while Dave assessed the rubber mallets. (I think he was thinking of buying me one, but he was afraid I would actually use it to knock them over the head when they are refusing to go to sleep at night. I would never, but it's probably best not to have that or tranquilizer darts in the house.) Anyway, when it was time to go, we went through the whole "tell it bye bye, give it love" transition, but Luke Roper had no intention of leaving that ball at the store. When I took it from his hands, he lost it. He screamed like I was peeling him all the way home. At home, I tried to put him down for nap and he kept fussing at me in his mad voice and saying, "Ball!" I decided to let him have a few minutes to wind down and try again for the nap.
During that time, he and Dave were playing blocks in his bedroom and Ella went in there to play. Shortly, I heard screaming and genuine crying and Daddy's scolding voice. I was trying to find somewhere to lock myself, but they found me. I overheard enough to know that Luke hit Ella in the head with a block. She was crying real tears and Dave was attending her. I scooped Luke up and tried that nap again. He needed it badly, but instead of falling straight to sleep like he normally does, we kept having this conversation.
Luke: Eh?
Me: Ella is with Daddy. He's taking care of her.
Luke: (while patting his head) Eh. Hit head. Block.
Me: I know you hit her head with a block. We don't use blocks for hitting people.
Luke: Daddy?
Me: Daddy is taking care of Ella.
Luke: (patting his head) Hit head. Block. Daddy.
Me: I know Daddy told you not to use blocks for hitting. We use our soft touch with each other.
And so it went until I took him out to the living room to see them both and know that everything was okay. He was very worried about Ella and very worried about the scolding he got from Dave. After that, he finally went to sleep.
So, I learned something. He's so much like me. He's as much like me as Ella is like Dave.
Ella and Dave have tempers like the Fire Swamp in The Princess Bride - quick to flare up and quick to die out. Luke and I, well, we're more like that pot you keep watching, waiting for it to boil and it's taking forever until suddenly it's boiling over and then you keep turning it down but it keeps boiling up again and making a mess all over the stove. Yeah, that's us. Slow to anger and slow to get over it. And, it seems like it's not just the messy temper he got from me. The way he worried about Dave and Ella after the block hitting deal makes me think he might also have inherited my tendency to be really hard on myself. I am and have always been my harshest critic. I kind of hate it for him because I know that forgiving myself for something is one of the hardest things for me to do - much harder than forgiving others. But I also know that there is not much anyone else can say to me that I haven't already said to myself. That makes it so much easier to let other people's crap roll off my back. And really, when you meet someone's angry tirade about something you've done or said with, "You're right, I am a jackhole. Please be angry with me; I deserve it" - well, there just isn't much left to say.
I know this about me because I'm a study in my own personal psychology. I know it about Luke because now he has enough words to tell me what he's thinking about, and what he was thinking about all afternoon was the ball I made him leave at the Tractor Supply Co. and the block to the head incident.
While he made me nuts all Sunday afternoon with his angry fits, I can't complain too much. For the most part his second year has been all climbing naughtiness. I guess he was about due for expressing his discontent with my parenting.
P.S. Because it deserves to be noted, EGR did not even retaliate when Luke smacked her over the head with a block. Amazing.
Oh my mercy. Luke celebrated his 19th birthmonthday with a record breaking tantrum followed by an Incident with a block and his sister's head.
After church and lunch yesterday, we took the kids to Tractor Supply in hopes of seeing the baby chicks and ducklings. It really wasn't good timing for Luke as he was already starting to fall asleep in the car, but we did it because we knew they would love the fluffy babies. We were sadly disappointed to find them sold out, so we didn't get to see the babies and Luke was in such a state that things were scaring him. Those little faces that you stick on trees? Terrifying. The stuffed chickens? Scream inducing. We made our way out of there quickly, but we stopped at the front of the store where they have little bins of things you need. There was a ball. He grabbed it and talked about it for a few minutes while Dave assessed the rubber mallets. (I think he was thinking of buying me one, but he was afraid I would actually use it to knock them over the head when they are refusing to go to sleep at night. I would never, but it's probably best not to have that or tranquilizer darts in the house.) Anyway, when it was time to go, we went through the whole "tell it bye bye, give it love" transition, but Luke Roper had no intention of leaving that ball at the store. When I took it from his hands, he lost it. He screamed like I was peeling him all the way home. At home, I tried to put him down for nap and he kept fussing at me in his mad voice and saying, "Ball!" I decided to let him have a few minutes to wind down and try again for the nap.
During that time, he and Dave were playing blocks in his bedroom and Ella went in there to play. Shortly, I heard screaming and genuine crying and Daddy's scolding voice. I was trying to find somewhere to lock myself, but they found me. I overheard enough to know that Luke hit Ella in the head with a block. She was crying real tears and Dave was attending her. I scooped Luke up and tried that nap again. He needed it badly, but instead of falling straight to sleep like he normally does, we kept having this conversation.
Luke: Eh?
Me: Ella is with Daddy. He's taking care of her.
Luke: (while patting his head) Eh. Hit head. Block.
Me: I know you hit her head with a block. We don't use blocks for hitting people.
Luke: Daddy?
Me: Daddy is taking care of Ella.
Luke: (patting his head) Hit head. Block. Daddy.
Me: I know Daddy told you not to use blocks for hitting. We use our soft touch with each other.
And so it went until I took him out to the living room to see them both and know that everything was okay. He was very worried about Ella and very worried about the scolding he got from Dave. After that, he finally went to sleep.
So, I learned something. He's so much like me. He's as much like me as Ella is like Dave.
Ella and Dave have tempers like the Fire Swamp in The Princess Bride - quick to flare up and quick to die out. Luke and I, well, we're more like that pot you keep watching, waiting for it to boil and it's taking forever until suddenly it's boiling over and then you keep turning it down but it keeps boiling up again and making a mess all over the stove. Yeah, that's us. Slow to anger and slow to get over it. And, it seems like it's not just the messy temper he got from me. The way he worried about Dave and Ella after the block hitting deal makes me think he might also have inherited my tendency to be really hard on myself. I am and have always been my harshest critic. I kind of hate it for him because I know that forgiving myself for something is one of the hardest things for me to do - much harder than forgiving others. But I also know that there is not much anyone else can say to me that I haven't already said to myself. That makes it so much easier to let other people's crap roll off my back. And really, when you meet someone's angry tirade about something you've done or said with, "You're right, I am a jackhole. Please be angry with me; I deserve it" - well, there just isn't much left to say.
I know this about me because I'm a study in my own personal psychology. I know it about Luke because now he has enough words to tell me what he's thinking about, and what he was thinking about all afternoon was the ball I made him leave at the Tractor Supply Co. and the block to the head incident.
While he made me nuts all Sunday afternoon with his angry fits, I can't complain too much. For the most part his second year has been all climbing naughtiness. I guess he was about due for expressing his discontent with my parenting.
P.S. Because it deserves to be noted, EGR did not even retaliate when Luke smacked her over the head with a block. Amazing.
Thursday, March 15, 2012
We Aren't Good Waiters
And I don't mean the kind that serve food at restaurants, though I'm pretty sure I'd suck at that job, too.
We (I think I have to stop saying "we" so much, as it isn't my body I'm talking/writing about.. this time.) were supposed to have an appointment with an oncologist at the end of this month. That wasn't really acceptable for a variety of reasons, so we got a referral to the Bruno Cancer Center at St. Vincent's. The first appointment was this morning and we got good news.
He has an intermediate-grade lymphoma that is highly treatable, generally with chemotherapy alone. While we were there today, he had a bone marrow test done. Next week they'll do the PET scan to figure out what stage it's in. In the midst of that, the pathologist at St. Vincent's will review the slides of his tumors to confirm the diagnosis and make sure there isn't some weird variation that would make the treatment more complicated. There is a small possibility that it could be in his bone marrow and that would also make the treatment more complicated. Hopefully we'll find out that everything is as straight-forward as it appears and he can get started with chemo in the next couple of weeks. He is still recovering from a major surgery, so a couple more weeks of rest certainly aren't going to hurt him.
We both loved the doctor and the general friendliness of the cancer center. It felt like we were supposed to be there and greatly helped our comfort level with this process. I have no idea what chemo will do to him, but I imagine we still have a pretty crazy road ahead of us.
The kids are hanging in there but the stress is starting to show at times. I saw that the cancer center can hook us up with a support group for children of cancer patients, so that might be something we look into as we get into the treatment phase. I know that Ella is very worried even though she's not saying much right now. Every night she says a special prayer for Daddy and she'll ask just enough questions to let me know she's trying to figure this out. Luke is velcro. We can't leave his sight, and even when we are with him, he regularly does a roll call of all his people just to get a status update - even the dogs. He's also nursing more now that he has in months. I'm just going with it. It's been an abnormal month, even for us.
We (I think I have to stop saying "we" so much, as it isn't my body I'm talking/writing about.. this time.) were supposed to have an appointment with an oncologist at the end of this month. That wasn't really acceptable for a variety of reasons, so we got a referral to the Bruno Cancer Center at St. Vincent's. The first appointment was this morning and we got good news.
He has an intermediate-grade lymphoma that is highly treatable, generally with chemotherapy alone. While we were there today, he had a bone marrow test done. Next week they'll do the PET scan to figure out what stage it's in. In the midst of that, the pathologist at St. Vincent's will review the slides of his tumors to confirm the diagnosis and make sure there isn't some weird variation that would make the treatment more complicated. There is a small possibility that it could be in his bone marrow and that would also make the treatment more complicated. Hopefully we'll find out that everything is as straight-forward as it appears and he can get started with chemo in the next couple of weeks. He is still recovering from a major surgery, so a couple more weeks of rest certainly aren't going to hurt him.
We both loved the doctor and the general friendliness of the cancer center. It felt like we were supposed to be there and greatly helped our comfort level with this process. I have no idea what chemo will do to him, but I imagine we still have a pretty crazy road ahead of us.
The kids are hanging in there but the stress is starting to show at times. I saw that the cancer center can hook us up with a support group for children of cancer patients, so that might be something we look into as we get into the treatment phase. I know that Ella is very worried even though she's not saying much right now. Every night she says a special prayer for Daddy and she'll ask just enough questions to let me know she's trying to figure this out. Luke is velcro. We can't leave his sight, and even when we are with him, he regularly does a roll call of all his people just to get a status update - even the dogs. He's also nursing more now that he has in months. I'm just going with it. It's been an abnormal month, even for us.
Sunday, March 11, 2012
Quick Update
We came home Friday morning and Dave slept most of the day. He woke up Saturday ready to go to Ella's first soccer game. We did and afterward he requested pizza for lunch. I was thrilled to see him eat an entire piece, then he slept most of the rest of the day. This morning, he woke up ready for church and still felt well enough, and hungry enough, afterward to stay for lunch. It does my heart good to see him wanting to eat again.
We don't know anything else about the lymphoma right now. He has an appointment with the oncologist at the end of the month to find out more about the pathology and talk about what to do next. We know there is a PET scan in the future and probably a bone marrow test but for now his job is to heal. While is energy level is increasing every day and he's already getting stir crazy, his body is in no shape for additional testing or treatment right now.
Please continue to pray as we wait for more information and slowly get back to our normal lives. Thanks for the prayers, calls, messages, visits, meals, cards - all of it. It means more than I can say.
I'll leave you with this cuteness - pictures I received one morning in the hospital.
We are so very glad to be home and together again.
We don't know anything else about the lymphoma right now. He has an appointment with the oncologist at the end of the month to find out more about the pathology and talk about what to do next. We know there is a PET scan in the future and probably a bone marrow test but for now his job is to heal. While is energy level is increasing every day and he's already getting stir crazy, his body is in no shape for additional testing or treatment right now.
Please continue to pray as we wait for more information and slowly get back to our normal lives. Thanks for the prayers, calls, messages, visits, meals, cards - all of it. It means more than I can say.
I'll leave you with this cuteness - pictures I received one morning in the hospital.
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| It's hard to believe, but I promise I'm the mother of these children. |
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| This one especially looks like her father, and much older than 3 1/2. |
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| This is his very focused Cheese! face. |
Wednesday, March 07, 2012
Around the Hospital
Now we know that Demerol is very good, and it makes Dave very funny.
After the first round of Demerol finally gave him some relief from the pain Saturday morning, Dave told the nurse, “Now, I’d like to air some grievances.” Then he blabbered out some nonsensical things about the morphine that didn’t work and the food tray that should not have come to his room. He was very serious and he made no sense at all. I giggled freely while the nurses tried not to. That’s a perk of being the wife.
“He scared me last night when he grabbed my arm and wouldn’t let go.” That’s what the tech told me in the hallway after she encountered Demerol Dave in the middle of the night while trying to take his temperature. He really was not going to let go. I had to intervene.
In response to Dave telling her that he wasn’t taking the Demerol anymore, the night nurse said, “Oh, that’s too bad. You were kind of entertaining.”
He stuck to oral pain medicine after the first day.
Know what else is good? Thorazine. It stops hiccups. For real, people, they have a drug that stops hiccups. I only wish they’d given it to him sooner, but whatever, at least he got to sleep last night. Valium and Phenergan helped, but they kept coming back until he had Thorazine.
We’ve been here a full week now, and there have definitely been ups and downs. I think the biggest ups are when we get to sit outside for a few minutes and when we see the kids. They get so excited. So do we. The first day they came to see us when we had to meet them in the waiting room (because they weren’t allowed in the room), Luke was waiting outside the hall door and he started yelling, “Daddy! Daddy!” We parked Dave’s chair in the waiting room to play, and then we had to go back to the room for a few minutes to see the doctor. When we came back, Luke greeted us at the door again and escorted us back to the waiting room where he patted the floor so we would know where to park him. He wasn’t finished with Daddy yet.
Yesterday, Dave didn’t feel well enough to go to the waiting room, so I went by myself. Once Luke had loved on me for a minute, he took me by the hand and pulled me to the door, telling me, “Daddy!” I explained that Daddy wasn’t coming because he was taking nap. He tried twice more to run through the door and down the hall before I could get him. Today, we have a new room and the kids are allowed here. They came for a couple of hours and Luke had to get right up on the bed with Dave and talk about his incision: “Daddy. Bo-bo?” He needed to see it. Dave showed him and he was quite impressed.
Ella, upon seeing that we had hung up the penguin picture she made, said, “Oh, you put up your penguin. That’s so cute!” She had a project for Dave today. They shared the rolly table and colored a princess. She also writes him a note on his board when she’s here. She has been such a trooper through this experience. Her gracefulness right now is absolutely God working because she is completely out of her normal routine, and she is a child who needs routine.
As for Dave, we got verbal confirmation last night that his cancer is lymphoma. It’ll still be another day or so before we know what kind. I have to be perfectly honest and say that having that oncologist stand in the room and talk about PET scans and chemotherapy made the whole cancer aspect of this situation very real for me. I had a moment. I found the little chapel downstairs and cried myself dry. I came back to the room and told Dave I was freaking out, and from his sleepy haze he said, “Go wipe your worries on the spot.” I did it, then and a few more times, and I’m much better today. We’ll cross that bridge when we get there, but for now we are just trying to get home.
After the first round of Demerol finally gave him some relief from the pain Saturday morning, Dave told the nurse, “Now, I’d like to air some grievances.” Then he blabbered out some nonsensical things about the morphine that didn’t work and the food tray that should not have come to his room. He was very serious and he made no sense at all. I giggled freely while the nurses tried not to. That’s a perk of being the wife.
“He scared me last night when he grabbed my arm and wouldn’t let go.” That’s what the tech told me in the hallway after she encountered Demerol Dave in the middle of the night while trying to take his temperature. He really was not going to let go. I had to intervene.
In response to Dave telling her that he wasn’t taking the Demerol anymore, the night nurse said, “Oh, that’s too bad. You were kind of entertaining.”
He stuck to oral pain medicine after the first day.
Know what else is good? Thorazine. It stops hiccups. For real, people, they have a drug that stops hiccups. I only wish they’d given it to him sooner, but whatever, at least he got to sleep last night. Valium and Phenergan helped, but they kept coming back until he had Thorazine.
We’ve been here a full week now, and there have definitely been ups and downs. I think the biggest ups are when we get to sit outside for a few minutes and when we see the kids. They get so excited. So do we. The first day they came to see us when we had to meet them in the waiting room (because they weren’t allowed in the room), Luke was waiting outside the hall door and he started yelling, “Daddy! Daddy!” We parked Dave’s chair in the waiting room to play, and then we had to go back to the room for a few minutes to see the doctor. When we came back, Luke greeted us at the door again and escorted us back to the waiting room where he patted the floor so we would know where to park him. He wasn’t finished with Daddy yet.
Yesterday, Dave didn’t feel well enough to go to the waiting room, so I went by myself. Once Luke had loved on me for a minute, he took me by the hand and pulled me to the door, telling me, “Daddy!” I explained that Daddy wasn’t coming because he was taking nap. He tried twice more to run through the door and down the hall before I could get him. Today, we have a new room and the kids are allowed here. They came for a couple of hours and Luke had to get right up on the bed with Dave and talk about his incision: “Daddy. Bo-bo?” He needed to see it. Dave showed him and he was quite impressed.
Ella, upon seeing that we had hung up the penguin picture she made, said, “Oh, you put up your penguin. That’s so cute!” She had a project for Dave today. They shared the rolly table and colored a princess. She also writes him a note on his board when she’s here. She has been such a trooper through this experience. Her gracefulness right now is absolutely God working because she is completely out of her normal routine, and she is a child who needs routine.
As for Dave, we got verbal confirmation last night that his cancer is lymphoma. It’ll still be another day or so before we know what kind. I have to be perfectly honest and say that having that oncologist stand in the room and talk about PET scans and chemotherapy made the whole cancer aspect of this situation very real for me. I had a moment. I found the little chapel downstairs and cried myself dry. I came back to the room and told Dave I was freaking out, and from his sleepy haze he said, “Go wipe your worries on the spot.” I did it, then and a few more times, and I’m much better today. We’ll cross that bridge when we get there, but for now we are just trying to get home.
Tuesday, March 06, 2012
Our Door Sign
Dave has had so many visitors during his hospital stay that I had to start keeping a list because there’s no way my Mommy Brain would remember them all. I’m beginning to understand why people feel called to visit others in the hospital. It’s not my usual M.O., but we’ve been loved by so many people, and the visits have been so appreciated, that I think God is working on my poor introverted soul about this.
We have a sense peace about this new adventure in our life, and truthfully, right now we are focused on his recovery from surgery so our family can live together in our house again soon. It’s quite a project, this recovery. Saturday was hideous, and most people who visited either found him sleeping or encountered his alter ego, Demerol Dave (more about him in another post). Sunday was a much better day, one with a lot less Demerol and a lot more Regular Dave. He got up and showered, and took several walks. We saw the kids. He actually got hungry. Monday started out great. I went home to get something I needed for work, and by the time I came back, he had already showered and dressed (and tied is shoes- that’s hard to do with a 12 inch incision in your belly) and was ready to go. We walked all over the hospital and found the little prayer garden so he could sit in the sun for a few minutes for the first time in a week. All was well until he broke out in a fit of hiccups that lasted SIX HOURS. Holy moly. He was having reflux with them, so his throat and chest were on fire, and after six hours of hiccups, his belly was sore, too. It took 2 doses of Valium, some Tums, and finally, a shot of phenergan to stop them – and knock him out. It was the nurse’s idea to try the phenergan because, “It sounds like he’s throwing up.” It did. I kept jumping up with the vomit cup, but I am very conditioned to react to that sound. I’m so glad I didn’t have to listen to that all night.
Through all this work of recovery, we’ve had plenty of time to discuss all that has happened since last Tuesday, usually in the middle of the flippin’ night. It was during one of these conversations that he told me that he really feels very positive about this whole cancer situation but he feels like some of his visitors are projecting their worry onto him. I decided then and there to make a sign for his door. This is what it says, but it doesn’t look this professional. I wrote it in marker, just like the old days when I was The Birthday Sign Maker at Lucky’s. I even signed it “Thanks, Management,” which apparently freaked out the hospital staff. Oops.
We can both feel the prayers wrapped around us. We know that God is working here. We can see it in every step of the process – the timing, the people - every little thing. With that sense of peace, there’s really no room for worry in our hearts right now. We aren’t dwelling on the tumors that the surgeon removed, but we are praising God for the pain that brought him here to find those tumors. He doesn’t feel or look sick, and he says that even with the pain from the surgery he feels better than he has in weeks. That’s a blessing! He told me last week that he just wants to be able to play with his kids and not be so tired all the time. Well guess what? Now we know why he was so tired. And we’re fixing it. So, though you may be worried, please bring your joy when you call or text or email or visit – because really, there’s no room for worry right now. We have work to do.
And, thank you to everyone who has prayed for and with us. It’s an act of kindness that soothes my soul and sometimes makes me cry. We have needed it; we still need it. Please keep praying with us. It helps us keep our joy.
We have a sense peace about this new adventure in our life, and truthfully, right now we are focused on his recovery from surgery so our family can live together in our house again soon. It’s quite a project, this recovery. Saturday was hideous, and most people who visited either found him sleeping or encountered his alter ego, Demerol Dave (more about him in another post). Sunday was a much better day, one with a lot less Demerol and a lot more Regular Dave. He got up and showered, and took several walks. We saw the kids. He actually got hungry. Monday started out great. I went home to get something I needed for work, and by the time I came back, he had already showered and dressed (and tied is shoes- that’s hard to do with a 12 inch incision in your belly) and was ready to go. We walked all over the hospital and found the little prayer garden so he could sit in the sun for a few minutes for the first time in a week. All was well until he broke out in a fit of hiccups that lasted SIX HOURS. Holy moly. He was having reflux with them, so his throat and chest were on fire, and after six hours of hiccups, his belly was sore, too. It took 2 doses of Valium, some Tums, and finally, a shot of phenergan to stop them – and knock him out. It was the nurse’s idea to try the phenergan because, “It sounds like he’s throwing up.” It did. I kept jumping up with the vomit cup, but I am very conditioned to react to that sound. I’m so glad I didn’t have to listen to that all night.
Through all this work of recovery, we’ve had plenty of time to discuss all that has happened since last Tuesday, usually in the middle of the flippin’ night. It was during one of these conversations that he told me that he really feels very positive about this whole cancer situation but he feels like some of his visitors are projecting their worry onto him. I decided then and there to make a sign for his door. This is what it says, but it doesn’t look this professional. I wrote it in marker, just like the old days when I was The Birthday Sign Maker at Lucky’s. I even signed it “Thanks, Management,” which apparently freaked out the hospital staff. Oops.
We can both feel the prayers wrapped around us. We know that God is working here. We can see it in every step of the process – the timing, the people - every little thing. With that sense of peace, there’s really no room for worry in our hearts right now. We aren’t dwelling on the tumors that the surgeon removed, but we are praising God for the pain that brought him here to find those tumors. He doesn’t feel or look sick, and he says that even with the pain from the surgery he feels better than he has in weeks. That’s a blessing! He told me last week that he just wants to be able to play with his kids and not be so tired all the time. Well guess what? Now we know why he was so tired. And we’re fixing it. So, though you may be worried, please bring your joy when you call or text or email or visit – because really, there’s no room for worry right now. We have work to do.
And, thank you to everyone who has prayed for and with us. It’s an act of kindness that soothes my soul and sometimes makes me cry. We have needed it; we still need it. Please keep praying with us. It helps us keep our joy.
Monday, March 05, 2012
The Debriefing, Part 2
Read the first part of the story here.
Once I committed to the surgery that day, we were whisked away through the secret passageways of the hospital – the ones you don’t see if you are just visiting there - to the operating room. They allowed me into the holding area while they prepped him and asked a ton of questions that I mostly answered for him because he was still drugged. Then I signed the consent form because he wasn’t in a legal state of mind to do it. They showed me to a waiting area right next to the building where our room was, but I had no idea how to get to it from there. I was completely lost in a maze of corridors until my dad showed me the way back to the room later.
I sat outside on the sidewalk and called our families to tell them what the GI doctor found and that he was in surgery. Half of my family was coming to sit with me while the other half took care of Ella and Luke. I nearly lost my composure while talking to Dave’s brother because I didn’t know how to tell his Nana. She doesn’t hear well over the phone, so I felt like she needed to hear it in person, and I felt so guilty that I had to ask his brother to give her that news on the eve of her birthday. I still hope that was the right decision.
Then I went inside to wait. A crowd of love surrounded me and distracted me for the 2 hours of surgery. We were the only people in the place, and that was nice, too. When they called me back to the consultation room, I went alone, but my dad followed me. That was an act of kindness I really needed but couldn’t ask for; I was so grateful.
As the surgeon talked, I grabbed a piece of paper and the pencil from the middle of the table to take notes and keep myself present. I knew I would need to tell Dave everything, and I didn’t want to miss anything in my shock. He was telling me that they got the tumor from the colon, but he found 3 more in the small intestine. He also removed the swollen lymph nodes from that side of the abdomen. It didn’t look like a typical colon cancer; it might be some sort of lymphoma. He called Dave a “diagnostic dilemma” because his case was difficult from the minute we arrived in the ER. Because of his age and the strangeness in the number and location of the tumors, they decided to send them to the pathology lab at Vanderbilt . It would be six days before we knew anything else. If it is lymphoma, it might be in other parts of his body; chemotherapy is a strong possibility. We won’t know anything until the pathology report comes back, but all three surgeons involved in this case tell us that we want this to be lymphoma because it is so treatable.
I absorbed this news and cried like a baby on my dad’s shoulder for a few minutes before I went back to the rest of my family. There, I gave my first recitation of everything I’d learned – a practice round, for when I would later tell Dave. The thought of telling him that there was more bad news was more than I could handle in the moment. I cried and cried, then got myself together to make all the phone calls again. More practice rounds that I desperately needed. Sometimes just saying the words that scare you over and over again make them not so scary anymore.
They finally called to tell me he was out of recovery and moved to his room. I met him there and settled in for a long night. He was in so much pain, so he spent the night trying to survive it and peppering me with questions that he didn’t remember the answers to until the morning when he told me, “I’m ready for a debriefing now.”
So, now he knows, and like me, he’s practicing saying the words that scare him. We will wait some more, with joyful hearts and lots of hope and even more “Please God.”
Once I committed to the surgery that day, we were whisked away through the secret passageways of the hospital – the ones you don’t see if you are just visiting there - to the operating room. They allowed me into the holding area while they prepped him and asked a ton of questions that I mostly answered for him because he was still drugged. Then I signed the consent form because he wasn’t in a legal state of mind to do it. They showed me to a waiting area right next to the building where our room was, but I had no idea how to get to it from there. I was completely lost in a maze of corridors until my dad showed me the way back to the room later.
I sat outside on the sidewalk and called our families to tell them what the GI doctor found and that he was in surgery. Half of my family was coming to sit with me while the other half took care of Ella and Luke. I nearly lost my composure while talking to Dave’s brother because I didn’t know how to tell his Nana. She doesn’t hear well over the phone, so I felt like she needed to hear it in person, and I felt so guilty that I had to ask his brother to give her that news on the eve of her birthday. I still hope that was the right decision.
Then I went inside to wait. A crowd of love surrounded me and distracted me for the 2 hours of surgery. We were the only people in the place, and that was nice, too. When they called me back to the consultation room, I went alone, but my dad followed me. That was an act of kindness I really needed but couldn’t ask for; I was so grateful.
As the surgeon talked, I grabbed a piece of paper and the pencil from the middle of the table to take notes and keep myself present. I knew I would need to tell Dave everything, and I didn’t want to miss anything in my shock. He was telling me that they got the tumor from the colon, but he found 3 more in the small intestine. He also removed the swollen lymph nodes from that side of the abdomen. It didn’t look like a typical colon cancer; it might be some sort of lymphoma. He called Dave a “diagnostic dilemma” because his case was difficult from the minute we arrived in the ER. Because of his age and the strangeness in the number and location of the tumors, they decided to send them to the pathology lab at Vanderbilt . It would be six days before we knew anything else. If it is lymphoma, it might be in other parts of his body; chemotherapy is a strong possibility. We won’t know anything until the pathology report comes back, but all three surgeons involved in this case tell us that we want this to be lymphoma because it is so treatable.
I absorbed this news and cried like a baby on my dad’s shoulder for a few minutes before I went back to the rest of my family. There, I gave my first recitation of everything I’d learned – a practice round, for when I would later tell Dave. The thought of telling him that there was more bad news was more than I could handle in the moment. I cried and cried, then got myself together to make all the phone calls again. More practice rounds that I desperately needed. Sometimes just saying the words that scare you over and over again make them not so scary anymore.
They finally called to tell me he was out of recovery and moved to his room. I met him there and settled in for a long night. He was in so much pain, so he spent the night trying to survive it and peppering me with questions that he didn’t remember the answers to until the morning when he told me, “I’m ready for a debriefing now.”
So, now he knows, and like me, he’s practicing saying the words that scare him. We will wait some more, with joyful hearts and lots of hope and even more “Please God.”
The Debriefing, Part 1
In the wee hours of the morning on March 3, Dave came out of his drug induced haze and told me plainly, "I'm ready for a debriefing now." This was to be the real one, the first time he was conscious enough to absorb all that I had been telling him through the night. He had been asking, over and over again, like they said he would, but he didn't remember.
I started from the last thing he did remember. At noon on March 2, we were cuddled in his bed watching a movie on the laptop when they finally came to get him for his colonoscopy. He'd been up since 5, waiting for it. He was not a happy camper.
They drove him in a wheelchair to the other side of the hospital and directed me to a waiting room. I later heard from the doctor that he was bargaining about how to get out the next day for his Nana's 90th birthday party. I waited for 2 hours before the nurse called me back to the consultation room. I waited there another 20 minutes that felt like an eternity. I tried hard not to have a panic attack. There wasn't enough room to pace without getting dizzy, and my heart rate was already so fast I felt light headed. I just tried to control my breathing (that Hypnobabies training is still working). I prayed the prayer of the speechless, over and over, like a chant: "Please God. Please God. Please God." I know He knows the words in my heart even when there are no words in my mouth, and thank Heaven because there has been a lot of "Please God."
I finally heard the doctor come out. I also overheard the nurse make a comment about a closed door and something being bad, then the doctor asked if she would come with him. Then he went to the room next door, to the lady who had been called back after me. The nurse did not go in there with him. She waited in the hall. Then she came to my room. I'm grateful for those few minutes of knowing that what he was going to say to me would knock the breath out of my lungs.
Then he came to my room he told me quick and straight that he'd found a tumor in Dave's colon and it would have to be removed. He showed me a diagram to point out the location and assured me that Dave would not need a colostomy bag - that was one of his big worries. He explained how much colon they would need to take out, that 99% of the time a tumor like this one is cancer, and that he'd already called the surgeon. I took all of that like a woman and then I nearly lost it when he said that Dave didn't know yet.
The doctor took me to Dave's bed. He was still sleeping and I hoped hard that he would stay asleep until the doctor came back to explain it with me. He didn't. He rolled over and looked at me and said, "Is it bad?" I nodded. "Cancer?" Probably. Then it was a whirlwind of explanation about surgery and risks and tumors and timelines, and we had to repeat it all several times because he was still sedated and couldn't remember. The surgeon joined us and, as God would have it, he had a slot open at that exact time because the weather was bad and they had been sending people home. He told us we could wait until next week, but it would mean being readmitted and going through the prep again. Thankfully, Dave looked at me and asked what I thought we should do. I said, "Do it today."
I started from the last thing he did remember. At noon on March 2, we were cuddled in his bed watching a movie on the laptop when they finally came to get him for his colonoscopy. He'd been up since 5, waiting for it. He was not a happy camper.
They drove him in a wheelchair to the other side of the hospital and directed me to a waiting room. I later heard from the doctor that he was bargaining about how to get out the next day for his Nana's 90th birthday party. I waited for 2 hours before the nurse called me back to the consultation room. I waited there another 20 minutes that felt like an eternity. I tried hard not to have a panic attack. There wasn't enough room to pace without getting dizzy, and my heart rate was already so fast I felt light headed. I just tried to control my breathing (that Hypnobabies training is still working). I prayed the prayer of the speechless, over and over, like a chant: "Please God. Please God. Please God." I know He knows the words in my heart even when there are no words in my mouth, and thank Heaven because there has been a lot of "Please God."
I finally heard the doctor come out. I also overheard the nurse make a comment about a closed door and something being bad, then the doctor asked if she would come with him. Then he went to the room next door, to the lady who had been called back after me. The nurse did not go in there with him. She waited in the hall. Then she came to my room. I'm grateful for those few minutes of knowing that what he was going to say to me would knock the breath out of my lungs.
Then he came to my room he told me quick and straight that he'd found a tumor in Dave's colon and it would have to be removed. He showed me a diagram to point out the location and assured me that Dave would not need a colostomy bag - that was one of his big worries. He explained how much colon they would need to take out, that 99% of the time a tumor like this one is cancer, and that he'd already called the surgeon. I took all of that like a woman and then I nearly lost it when he said that Dave didn't know yet.
The doctor took me to Dave's bed. He was still sleeping and I hoped hard that he would stay asleep until the doctor came back to explain it with me. He didn't. He rolled over and looked at me and said, "Is it bad?" I nodded. "Cancer?" Probably. Then it was a whirlwind of explanation about surgery and risks and tumors and timelines, and we had to repeat it all several times because he was still sedated and couldn't remember. The surgeon joined us and, as God would have it, he had a slot open at that exact time because the weather was bad and they had been sending people home. He told us we could wait until next week, but it would mean being readmitted and going through the prep again. Thankfully, Dave looked at me and asked what I thought we should do. I said, "Do it today."
Friday, March 02, 2012
Waiting, Waiting and Writing
This has been a whirlwind week of hurry up and wait, hurry up and wait. As I type, we are waiting for Dave to go for a GI test that will hopefully explain the pain and symptoms that brought us to the ER Tuesday night. If this test doesn't tell us anything, I understand that we'll move on to another one tomorrow.
When I brought him to the ER Tuesday, the pain was debilitating. Honestly, he looked like a woman in labor, the way he had to focus and breathe through it. He told me, "If they tell me nothing is wrong and send me home, I'm going to walk back in the door and sign in again." They were able to relieve the pain with IV narcotics and fluids. He had an ultrasound and a CT scan in the ER and was later admitted "to the surgeons" with a suspected small bowel obstruction. For a full day, he had IV fluid and nothing by mouth. The surgeon ordered a follow up x-ray yesteray (Thursday, I think?) and it showed improvement in the obstruction. Basically, the contrast he drank for the CT scan had passed all the way through the intestine but there was still inflammation. At that point, the surgeon stepped back to let the GI doctor take over to try to figure out what caused the obstruction. Surgery is still a possiblity, but hopefully it won't be necessary.
He was able to get some broth and juice yesterday, and he handled it well. He still has some pain, but not enough to take the narcotics. He's anxiously waiting for answers. He's never really been sick, ever, so this is a very new experience for him. It has definitely been an exercise in patience.
As we wait in faith, trying hard to remember the grace that God gave us and let His love show, I can see lots of little ways that He is taking care of us. Monday night, both kids slept through the night. That's only happened once before, and was much needed since I did not sleep again until 5:00 Wednesday morning. Also, the last 3.5 years of sleep deprivation? Obviously training for that hard 24 hour stretch - like a marathon runner, right? The kids have handled all of this disruption in our routine amazingly well. They've been to visit Daddy in the hospital twice and Ella wrote him a note on his white board. I am able to work from the hospital room, so I'm not just completely burning my sick time. On top of that, my boss brought me my laptop so I didn't have to drive to the office to get it. My family is taking care of the house and kids while I just try to keep it together. And most of all, Dave and I have spent tons of time just being together, which we both need. I do have a bit of struggle with Mommy Guilt about being away from the kids so much, but I know that they are well cared for so I can listen to my heart and be here with Dave. Hospitals are lonely places, and I don't want him to be lonely.
When I brought him to the ER Tuesday, the pain was debilitating. Honestly, he looked like a woman in labor, the way he had to focus and breathe through it. He told me, "If they tell me nothing is wrong and send me home, I'm going to walk back in the door and sign in again." They were able to relieve the pain with IV narcotics and fluids. He had an ultrasound and a CT scan in the ER and was later admitted "to the surgeons" with a suspected small bowel obstruction. For a full day, he had IV fluid and nothing by mouth. The surgeon ordered a follow up x-ray yesteray (Thursday, I think?) and it showed improvement in the obstruction. Basically, the contrast he drank for the CT scan had passed all the way through the intestine but there was still inflammation. At that point, the surgeon stepped back to let the GI doctor take over to try to figure out what caused the obstruction. Surgery is still a possiblity, but hopefully it won't be necessary.
He was able to get some broth and juice yesterday, and he handled it well. He still has some pain, but not enough to take the narcotics. He's anxiously waiting for answers. He's never really been sick, ever, so this is a very new experience for him. It has definitely been an exercise in patience.
As we wait in faith, trying hard to remember the grace that God gave us and let His love show, I can see lots of little ways that He is taking care of us. Monday night, both kids slept through the night. That's only happened once before, and was much needed since I did not sleep again until 5:00 Wednesday morning. Also, the last 3.5 years of sleep deprivation? Obviously training for that hard 24 hour stretch - like a marathon runner, right? The kids have handled all of this disruption in our routine amazingly well. They've been to visit Daddy in the hospital twice and Ella wrote him a note on his white board. I am able to work from the hospital room, so I'm not just completely burning my sick time. On top of that, my boss brought me my laptop so I didn't have to drive to the office to get it. My family is taking care of the house and kids while I just try to keep it together. And most of all, Dave and I have spent tons of time just being together, which we both need. I do have a bit of struggle with Mommy Guilt about being away from the kids so much, but I know that they are well cared for so I can listen to my heart and be here with Dave. Hospitals are lonely places, and I don't want him to be lonely.
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