Matt's Raiders are now 4 team members strong! Matt's Aunt Liz has also joined the cause and will be walking with Matt's Raiders on Saturday at the Night the Light fundraiser. Matt's Raiders have raised $ 850!!! Way to go!
Matt is still not feeling well. I spent the last two nights in Hailey's room again. This way Matt gets some space and uninterrupted sleep. And it keeps Hailey from coming to our room and waking us in the middle of the night... she tends to do that more frequently on nights of Matt's bad week.
I'm tired. I stay up too late on nights when Matt goes to bed early. I need someone telling me it's time for bed! I think tonight will be an early night, though. And... I'm claiming my half of the bed back.
Thursday, September 24, 2009
Wednesday, September 23, 2009
13. The Day After Chemo #5
Matt is doing a bit better than last night. His sister Becky took him for his Neulasta shot today. The nurse showed Matt how to give the shot to himself. Next time he will be taking Neupogen, which allows Matt to take 3 smaller doses spread over 3 days. Hopefully, this will alleviate some of his bone pain and skin sensitivity he's been experiencing from the single higher dose Neulasta. Since he'll have to have shots 3 days in a row and driving to Holland when he's not feeling that well anyway is a big inconvenience, he will be administering the shots himself. Yikes! I'm glad I don't have to do that. I do not like needles in me or anyone else.
On a happy note: Sue's team 'Matt's Raiders' have now raised $625 for the Leukemia and Lymphoma Society!!! Go Team!
The team is now three members strong with Matt's mother Mary joining Sue and Bill at the walk on Saturday in Chicago.
If it weren't Matt's "bad week" we'd so be there walking with them! What fun that would be!
Follow this link, if you'd like to join the team in walking or make a donation in Matt's honor: http://pages.lightthenight.org/il/ChicagoL09/MattsRaiders
On a happy note: Sue's team 'Matt's Raiders' have now raised $625 for the Leukemia and Lymphoma Society!!! Go Team!
The team is now three members strong with Matt's mother Mary joining Sue and Bill at the walk on Saturday in Chicago.
If it weren't Matt's "bad week" we'd so be there walking with them! What fun that would be!
Follow this link, if you'd like to join the team in walking or make a donation in Matt's honor: http://pages.lightthenight.org/il/ChicagoL09/MattsRaiders
Tuesday, September 22, 2009
12. Chemo # 5
Matt had Chemo # 5 today. We saw the doctor who adjusted Matt's chemo dosage based on his 25 lb weight gain since Chemo # 1. Matt will have his first PET scan since he started treatment, in 3-4 weeks from now. The appointment has not been scheduled yet. Hopefully, the cancer will be all gone. Then he'll have 'only' 3 more cycles, which are 6 more treatments = 3 months.
Matt is super tired. My mom made Pasti for us tonight - YUM! Thank you! Then Matt went to bed at 6:30 pm. I put the kids down at eight... and yes, I think Sylvia is over her pacifier. Yeah Sylvia! no crying tonight. It's night # 3 without pacifier for her. The last two nights were rough. She was up until past 11 pm the first night and past 9:30pm last night. But, her teeth are being moved forward by the paci and the dentist said the longer she uses the paci, the less likely her teeth will correct themselves.
Also, Sylvia started dance class. She is such a little pro after watching Hailey for the last two years. I'm proud of both of them. Hailey still loves Kindergarten and all her teachers.
I hope Matt starts feeling better soon.
10:00pm
Matt is feeling worse than ever. Usually he waits about 48 hours before he starts taking his anti-nausea meds. He took some after only 4 hours and is still feeling really ill. It's much different this time. I wonder if it's because they adjusted his dosage? I'll keep you posted on how he's doing tomorrow.
Matt is super tired. My mom made Pasti for us tonight - YUM! Thank you! Then Matt went to bed at 6:30 pm. I put the kids down at eight... and yes, I think Sylvia is over her pacifier. Yeah Sylvia! no crying tonight. It's night # 3 without pacifier for her. The last two nights were rough. She was up until past 11 pm the first night and past 9:30pm last night. But, her teeth are being moved forward by the paci and the dentist said the longer she uses the paci, the less likely her teeth will correct themselves.
Also, Sylvia started dance class. She is such a little pro after watching Hailey for the last two years. I'm proud of both of them. Hailey still loves Kindergarten and all her teachers.
I hope Matt starts feeling better soon.
10:00pm
Matt is feeling worse than ever. Usually he waits about 48 hours before he starts taking his anti-nausea meds. He took some after only 4 hours and is still feeling really ill. It's much different this time. I wonder if it's because they adjusted his dosage? I'll keep you posted on how he's doing tomorrow.
Sue Scott's Fundraising Page
My Aunt Sue and Bill set up this Team in honor of my husband Matt Engel. If you'd like to make a donation to the Leukemia and Lymphoma Society, please follow the link below.
My Fundraising Page
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My Fundraising Page
Shared via AddThis
11. Matt's Raiders
Matt's Raiders:
My Aunt Susie and Bill are walking at 'Light the Night' in Chicago this Saturday, a fundraiser for the Leukemia and Lymphoma Society.
If you want more information just go to: http://www.lightthenight.org/il/
If you want to join Sue in the Mission to wipe out blood cancers donate to the Leukemia and Lymphoma Society @ http://pages.lightthenight.org/il/ChicagoL09/SScott
Thank you Sue and Bill, this means a lot to us. What a great idea!
Monday, September 14, 2009
10. It's becoming a routine with a slight downward spiral...
Monday, September 14th, 2009
I am having a hard time finding the motivation to update the blog.
I feel like I need to re-cap the last 4 weeks, but I don't really want to go back into the details. It hasn't been that bad - Don't get me wrong. But it is somewhat draining, trying to remember what has happened since chemo started. It has become somewhat of a routine that has a slight downward spiraling to it.
Matt goes in for chemo on Tuesday. On Wednesday he goes in for his Neulasta shot. It helps his bone marrow produce more white blood cells, which are getting killed off by the chemo. BTW, the shot runs $ 3,700 with chemo costing only $ 1,400 per treatment, you can image just how important this shot is in order to keep Matt infection free. Unfortunately, the Neulasta which is stimulating the bone marrow to produce the white blood cells, causes Matt's bones to ache all over. He says he has pain in his chest, sternum, hips and shoulders. Also, the chemo has made his skin very sensitive all over, especially the backs of his legs, arms, neck and back. His neck almost looks sun burned and that's what it feels like. He is more exhausted for longer periods each time.
Matt is such a good sport, though. He keeps his spirits up and pushes himself to stay active, when he can. He gets tired of being tired and is sick of feeling bad. He is so ready to get out of the house at times that he gets going just to realize, he can't quite do what he set out to do. Once he gets his energy back, he is in a good mood most of the time. Not that he's in a bad mood otherwise, he's just quiet. Sometimes, he gets a little down, but I'm actualy surprised how rarely that happens.
During Matt's 'bad week's' I try to take the girls out in the evenings and leave Matt alone. I think it's good for the girls to get out and have fun. It scares me to see the way Matt is on Tuesday evenings, Wednesday's and Thursday's - I wonder what the girls are thinking? Not that I'm trying to shelter the girls, but I want to show them a good time. I need it to. Matt is like a ghost around the house on those three days. He barely talks, which makes me feel like he's mad at me. Which he's not, but it 'feels' like he's giving me the silent treatment. I can't stand it. It's me - not him.
Anyway, the girls and I have had nice evenings out eating ice-cream, going to music in the park, going to the beach, playgrounds and for walks. We are keeping busy.
So, in summary: Matt has now been through 4 chemo treatments. That is one treatment every other week. He started chemo 7 weeks ago, tomorrow. He goes for his next treatment next week Tuesday. We are currently in his good week. Matt came to see Sylvia's first dance class today. She was so incredibly cute. Such a little performer! Afterward we celebrated at the Butler. It was so nice. We got home and Matt went to bed after we put the kids down at eight. This doesn't usually happen in the second week. He's usually feeling much better by now. It has me a little concerned that he is starting to feel week/fatigued/tired for longer periods each time. He has at least 8 more treatments to go. If each one gets worse, he's going to have less and less of a 'good week'.
He is also starting to dread Tuesday's earlier. Thursday night before the last treatment he said that the week hasn't been long enough. Sunday he said he's emotionally drained. It's a vicious cycle: chemo, feeling crappy, starting to get better, almost REALLY good, just to go back to chemo and start feeling crappy again.
Matt hardly complains though, so concider this me complaining for him... REALLY LOUD!
I am having a hard time finding the motivation to update the blog.
I feel like I need to re-cap the last 4 weeks, but I don't really want to go back into the details. It hasn't been that bad - Don't get me wrong. But it is somewhat draining, trying to remember what has happened since chemo started. It has become somewhat of a routine that has a slight downward spiraling to it.
Matt goes in for chemo on Tuesday. On Wednesday he goes in for his Neulasta shot. It helps his bone marrow produce more white blood cells, which are getting killed off by the chemo. BTW, the shot runs $ 3,700 with chemo costing only $ 1,400 per treatment, you can image just how important this shot is in order to keep Matt infection free. Unfortunately, the Neulasta which is stimulating the bone marrow to produce the white blood cells, causes Matt's bones to ache all over. He says he has pain in his chest, sternum, hips and shoulders. Also, the chemo has made his skin very sensitive all over, especially the backs of his legs, arms, neck and back. His neck almost looks sun burned and that's what it feels like. He is more exhausted for longer periods each time.
Matt is such a good sport, though. He keeps his spirits up and pushes himself to stay active, when he can. He gets tired of being tired and is sick of feeling bad. He is so ready to get out of the house at times that he gets going just to realize, he can't quite do what he set out to do. Once he gets his energy back, he is in a good mood most of the time. Not that he's in a bad mood otherwise, he's just quiet. Sometimes, he gets a little down, but I'm actualy surprised how rarely that happens.
During Matt's 'bad week's' I try to take the girls out in the evenings and leave Matt alone. I think it's good for the girls to get out and have fun. It scares me to see the way Matt is on Tuesday evenings, Wednesday's and Thursday's - I wonder what the girls are thinking? Not that I'm trying to shelter the girls, but I want to show them a good time. I need it to. Matt is like a ghost around the house on those three days. He barely talks, which makes me feel like he's mad at me. Which he's not, but it 'feels' like he's giving me the silent treatment. I can't stand it. It's me - not him.
Anyway, the girls and I have had nice evenings out eating ice-cream, going to music in the park, going to the beach, playgrounds and for walks. We are keeping busy.
So, in summary: Matt has now been through 4 chemo treatments. That is one treatment every other week. He started chemo 7 weeks ago, tomorrow. He goes for his next treatment next week Tuesday. We are currently in his good week. Matt came to see Sylvia's first dance class today. She was so incredibly cute. Such a little performer! Afterward we celebrated at the Butler. It was so nice. We got home and Matt went to bed after we put the kids down at eight. This doesn't usually happen in the second week. He's usually feeling much better by now. It has me a little concerned that he is starting to feel week/fatigued/tired for longer periods each time. He has at least 8 more treatments to go. If each one gets worse, he's going to have less and less of a 'good week'.
He is also starting to dread Tuesday's earlier. Thursday night before the last treatment he said that the week hasn't been long enough. Sunday he said he's emotionally drained. It's a vicious cycle: chemo, feeling crappy, starting to get better, almost REALLY good, just to go back to chemo and start feeling crappy again.
Matt hardly complains though, so concider this me complaining for him... REALLY LOUD!
Tuesday, September 8, 2009
9. out of sequence...
Tuesday, September 8th, 2009
It's taking me a while to get caught up to present day and I don't really want to ruin the sequence of events, however I'd like to let everyone know how Matt is currently doing, since that is ultimately what we all care about. It was a wonderful labor day weekend, on which I will elaborate more, when I get to this weekend in the sequence... but for now rest assured that Matt was doing very well (he had chemo today, so it was his 'good week' as we refer to the week before his chemo as opposed to the 'bad week' following chemo).
And yes... Matt completed the ropes course at John Ball Zoo Yesterday (Grand Rapids)! Go Daddy Go! ...as the girls cheered him on. We enjoyed it!
Also, Hailey was off to a wonderful first day of school/kindergarten! She is looking forward to going back tomorrow! Yeah Hailey!
It's taking me a while to get caught up to present day and I don't really want to ruin the sequence of events, however I'd like to let everyone know how Matt is currently doing, since that is ultimately what we all care about. It was a wonderful labor day weekend, on which I will elaborate more, when I get to this weekend in the sequence... but for now rest assured that Matt was doing very well (he had chemo today, so it was his 'good week' as we refer to the week before his chemo as opposed to the 'bad week' following chemo).
And yes... Matt completed the ropes course at John Ball Zoo Yesterday (Grand Rapids)! Go Daddy Go! ...as the girls cheered him on. We enjoyed it!
Also, Hailey was off to a wonderful first day of school/kindergarten! She is looking forward to going back tomorrow! Yeah Hailey!
Friday, September 4, 2009
8. The two weeks following chemo # 1
Thursday, July 30th, 2009
I was planning on staying home from work today. Not knowing what to expect I wanted to be there for Matt if he was getting sick or had to go back to the Dr. office or needed another anti-nausea prescription. We didn't know what to expect, but since he was just sleeping, I decided to go to work at 10:30am. Matt got annoyed with me because I kept calling to check on him, which woke him up. Too bad, I know he needs his rest, but I need to make sure he's fine. ;0)
Which he was. He said he felt like his heart was racing when he got up to go to the bathroom once, but that was all.
Friday, July 31st, 2009
We are scheduled to go for a heart test at the Holland Hospital. I went to work in the morning and then picked Matt up for his appointment. Honestly, we thought Matt was going to walk on a treadmill hooked up to some heart monitors. Nope. They are so much more sophisticated than that now. Which we realized once they sent us to the Radiology department. Matt was once again injected with a radioactive dye and then they started taking images of his heart. The computer can calculate the ejection fraction just by "watching" the heart beat. Fascinating. I got to stay in the room and watch. Matt was happy they didn't access his port. His results were 64% (normal is 50% or greater) and this is considered his Pre-treatment result. He will have more of these test to make sure the drugs aren't damaging his heart.
I'm a little concerned because the drug pamphlet they gave us for the bleomycin said he should be getting lung tests, too. But Wendy said that they weren't ordered. They will do the lung test if Matt experiences any breathing difficulties.
We got home after picking up the kids from my mom's house and Matt went back to bed. I get stir crazy at home when Matt is so tired and in bed all the time. So, the girls and I went downtown Saugatuck for Ice-cream and then we went to the play ground. Oh how they love that. On our way back to the car (I parked on top of the hill on Mason, at my grandma's house) the girls were so cute: they kept stopping to hug these humongous trees! and they'd kiss them, too! And we had so much fun. We got home and the kids went to bed so nice. They are wonderful children. I wonder what they are thinking. Sylvia (2.5 years) is too young to express anything. I feel like she's distanced herself from Matt a little. When we get ready to leave in the mornings she doesn't always want to give Matt a hug. I think it's just her way of dealing with it. Hailey (she'll be five in October) has said very little as well. I can't get her to talk about it. I'm sure both the kids notice things are different at home. I'd wish Hailey would ask me questions. On Wednesday night, after chemo, I was laying in Hailey's bed, it was late and Hailey hadn't fallen asleep yet either, I was reading stuff about Hodgkin's and treatment etc. I had printed on-line. I kept telling her to close her eyes and try to sleep when I thought she might be interested in what I was reading. She was. I read the list of possible lymphoma symptoms to her and asked her after each one if Daddy had the symptom and she'd look at me with big eyes and say "yes". So, she is aware. And when I got done with the list she said: "Daddy should read this tomorrow, it'll make him feel better." And I thought she must be like me, the more she knows the better she feels about it. Well, I started to explain to her about lymph nodes and about how the doctor took one out of daddy's neck, right where his stitches are, and that they sent it to a lab where another doctor took it and sliced it into very thin slices and looked at it under a microscope. I asked her if she knew what a microscope was and she said: "yes, it's when you look at something and it looks much closer, like the stars." I said: "well, that's a telescope. A microscope makes little things look really big." and I explained to her that they found cancer cells, but that it's ok because some scientist spent a lot of time finding medicine that would make the cancer cells go away. Hailey was hooked! She loved it... her eyes were big with excitement. I finally found a way to conect and talk to her about it. She just wanted to know. When we turned the lights out she said she wanted to go to the doctor with us next time, because she wanted to meet Daddy's new doctor.
Awh... I told her that someday she could go with us and we went to sleep.
Saturday, August 1st, 2009
It was a really windy, hot and humid day. The girls and I went out in the back yard and flew a kite. I filled the wading pool and the girls kept fighting and not listening... I was very frustrated. We only had one kite and both the girls wanted to hold it and they did not want to take turns and I was frustrated. I'm not so proud of how I am dealing with Matt being sick. It's scary and sad and... I know it's awful, but sometimes it's easier to be angry than sad. I don't know why, it's just that way. I don't know what Matt's feeling. He doesn't talk much. The angry-ness passes and Matt's up in the living room taking pictures of me with my whacked out hair - humidity + wind + flying kites + filling the kiddy pool = really frizzy hair even though I had it in a pony tail. We had fun and Matt posted the picture on FaceBook. Thanks Matt!
We actually went to Hercules' for lunch that day and had Ice-cream at around the corner (two days in a row for the girls!). Then went home and Matt crashed and he went to bed again.
Sunday, August 2nd, 2009 through Friday, August 7th, 2009
Matt was doing progressively better. He was doing better than he had been before his treatment. He was itchy on his sides of his torso and got some hives, which went away after a couple of days. The week was fairly event less. He went to work on a few of the days for a few hours at a time, coming home in the afternoon to take naps. It was a good week.
Saturday, August 8th, 2009
It was POURING, yet we decided to leave the kids with Matt's mom and venture up to Pentwater. Just Matt and I. As soon as we got there, the weather cleared up and it was a beautiful day! We had lunch at the Brown Bear Bar and sat on their balcony with a view down the channel onto Lake Michigan. We actually got some Christmas shopping done and had a really fun time. It's nice to go shopping without kids - a guilty pleasure. We got home just in time to put the kids to bed. Matt was feeling very well. He moves a little slower nowadays, but he seems really healthy!
Monday, August 10th, 2009
Jim and Mary, Matt's parents, took Becky, Matt and me out for dinner to the Everyday People Cafe, for our Aniversary. (Thank you Mom for watching the kids again!) It was a nice evening out. Matt seems so healthy. I am happy! Matt is dreading tomorrow - chemo again.
I was planning on staying home from work today. Not knowing what to expect I wanted to be there for Matt if he was getting sick or had to go back to the Dr. office or needed another anti-nausea prescription. We didn't know what to expect, but since he was just sleeping, I decided to go to work at 10:30am. Matt got annoyed with me because I kept calling to check on him, which woke him up. Too bad, I know he needs his rest, but I need to make sure he's fine. ;0)
Which he was. He said he felt like his heart was racing when he got up to go to the bathroom once, but that was all.
Friday, July 31st, 2009
We are scheduled to go for a heart test at the Holland Hospital. I went to work in the morning and then picked Matt up for his appointment. Honestly, we thought Matt was going to walk on a treadmill hooked up to some heart monitors. Nope. They are so much more sophisticated than that now. Which we realized once they sent us to the Radiology department. Matt was once again injected with a radioactive dye and then they started taking images of his heart. The computer can calculate the ejection fraction just by "watching" the heart beat. Fascinating. I got to stay in the room and watch. Matt was happy they didn't access his port. His results were 64% (normal is 50% or greater) and this is considered his Pre-treatment result. He will have more of these test to make sure the drugs aren't damaging his heart.
I'm a little concerned because the drug pamphlet they gave us for the bleomycin said he should be getting lung tests, too. But Wendy said that they weren't ordered. They will do the lung test if Matt experiences any breathing difficulties.
We got home after picking up the kids from my mom's house and Matt went back to bed. I get stir crazy at home when Matt is so tired and in bed all the time. So, the girls and I went downtown Saugatuck for Ice-cream and then we went to the play ground. Oh how they love that. On our way back to the car (I parked on top of the hill on Mason, at my grandma's house) the girls were so cute: they kept stopping to hug these humongous trees! and they'd kiss them, too! And we had so much fun. We got home and the kids went to bed so nice. They are wonderful children. I wonder what they are thinking. Sylvia (2.5 years) is too young to express anything. I feel like she's distanced herself from Matt a little. When we get ready to leave in the mornings she doesn't always want to give Matt a hug. I think it's just her way of dealing with it. Hailey (she'll be five in October) has said very little as well. I can't get her to talk about it. I'm sure both the kids notice things are different at home. I'd wish Hailey would ask me questions. On Wednesday night, after chemo, I was laying in Hailey's bed, it was late and Hailey hadn't fallen asleep yet either, I was reading stuff about Hodgkin's and treatment etc. I had printed on-line. I kept telling her to close her eyes and try to sleep when I thought she might be interested in what I was reading. She was. I read the list of possible lymphoma symptoms to her and asked her after each one if Daddy had the symptom and she'd look at me with big eyes and say "yes". So, she is aware. And when I got done with the list she said: "Daddy should read this tomorrow, it'll make him feel better." And I thought she must be like me, the more she knows the better she feels about it. Well, I started to explain to her about lymph nodes and about how the doctor took one out of daddy's neck, right where his stitches are, and that they sent it to a lab where another doctor took it and sliced it into very thin slices and looked at it under a microscope. I asked her if she knew what a microscope was and she said: "yes, it's when you look at something and it looks much closer, like the stars." I said: "well, that's a telescope. A microscope makes little things look really big." and I explained to her that they found cancer cells, but that it's ok because some scientist spent a lot of time finding medicine that would make the cancer cells go away. Hailey was hooked! She loved it... her eyes were big with excitement. I finally found a way to conect and talk to her about it. She just wanted to know. When we turned the lights out she said she wanted to go to the doctor with us next time, because she wanted to meet Daddy's new doctor.
Awh... I told her that someday she could go with us and we went to sleep.
Saturday, August 1st, 2009
It was a really windy, hot and humid day. The girls and I went out in the back yard and flew a kite. I filled the wading pool and the girls kept fighting and not listening... I was very frustrated. We only had one kite and both the girls wanted to hold it and they did not want to take turns and I was frustrated. I'm not so proud of how I am dealing with Matt being sick. It's scary and sad and... I know it's awful, but sometimes it's easier to be angry than sad. I don't know why, it's just that way. I don't know what Matt's feeling. He doesn't talk much. The angry-ness passes and Matt's up in the living room taking pictures of me with my whacked out hair - humidity + wind + flying kites + filling the kiddy pool = really frizzy hair even though I had it in a pony tail. We had fun and Matt posted the picture on FaceBook. Thanks Matt!
We actually went to Hercules' for lunch that day and had Ice-cream at around the corner (two days in a row for the girls!). Then went home and Matt crashed and he went to bed again.
Sunday, August 2nd, 2009 through Friday, August 7th, 2009
Matt was doing progressively better. He was doing better than he had been before his treatment. He was itchy on his sides of his torso and got some hives, which went away after a couple of days. The week was fairly event less. He went to work on a few of the days for a few hours at a time, coming home in the afternoon to take naps. It was a good week.
Saturday, August 8th, 2009
It was POURING, yet we decided to leave the kids with Matt's mom and venture up to Pentwater. Just Matt and I. As soon as we got there, the weather cleared up and it was a beautiful day! We had lunch at the Brown Bear Bar and sat on their balcony with a view down the channel onto Lake Michigan. We actually got some Christmas shopping done and had a really fun time. It's nice to go shopping without kids - a guilty pleasure. We got home just in time to put the kids to bed. Matt was feeling very well. He moves a little slower nowadays, but he seems really healthy!
Monday, August 10th, 2009
Jim and Mary, Matt's parents, took Becky, Matt and me out for dinner to the Everyday People Cafe, for our Aniversary. (Thank you Mom for watching the kids again!) It was a nice evening out. Matt seems so healthy. I am happy! Matt is dreading tomorrow - chemo again.
7. Chemo # 1
Wednesday, July 29th, 2009
I went with Matt for his first chemo treatment. They took his weight, temperature, blood pressure and pulse as we walked into the office. A private room opened up just as we got there. The room is small, has a comfy recliner for Matt and a not so comfy regular chair for me. There's a TV hanging in a corner and an IV bag holder with pump next to the recliner. Mary-Ann comes in to access the port and draws some blood for the CBC (Complete Blood Count) and starts a bag of fluids. Wendy unfortunately does not work on Wednesdays. Matt's Treatments will be schedule for every other Tuesday hereafter. Matt's white blood count was a little low at 2.6 (x10\S\3microL) normal range is 4-11. Yet, it's nothing to worry about.
Soon, Mary-Ann gives Matt the anti-nausea medication through his port, this takes about 1/2hour. Then she pushes 3 of the chemo drugs into the port via a syringe, which takes about 15min. and then starts the last chemo drug which hangs in a bag and is administered with the help of an IV pump (Dacarbazine).
A = Adriamycin, is an anthrcycline antibiotic. It stops the growth of cancer cells, causing cells to die.
More common side effects: decreased white blood cell count with increased risk of infection, decreased platelet count with increased risk of bleeding, loss of appetite, darkening of nail beds and skin creases of hands, Hair loss, Nausea, Vomiting.
Less common side effects: Sores in mouth, radiation recall skin changes (does not apply to Matt), Fetal abnormalities if taken while pregnant or if becoming pregnant while on this drug.
Rare side effects: Temporary changes in EKG, Irregular heartbeat, Heart damage with congestive heart failure
B = Bleomycin, is an antibiotic. Interferes with cell division, which results in the cells being destroyed.
More common side effects: Fever and chills, Nausea, Loss of appetite, Hair loss, Sores in mouth or on lips, skin changes, such as darkened, thckened areas of skin or nails, rash, or dry skin peeling at the fingertips.
Less common side effects: Pain at tumor site, Pait at place of injection, irritation of vein used for giving the drug, irritation of lungs.
Rare side effects: Scarring of lung tissue (if ever need surgery tell anesthesiologist you have had Bleomycin. After receiving this drug it is important no to receive pure oxygen (i.e. during surgery), Anaphylactic reaction with decreased blood pressure, confusion, rapid heart rate, wheezing, and facial swelling.
V = Vinblastine, is a plant (vinca) alkaloids. It stops cell division, resulting in cell death.
More common side effects: Decreased white blood cell count with increased risk of infection, decreased platelet count with increased risk of bleeding, Hair loss.
Less common side effects: Constipation, Numbness and tingling in the hands and/or feet related to peripheral nerve irritation.
Rare side effects: Depression, Headache, jaw pain, difficulty emptying bladder, increased heart rate, dizziness when changing position, changes in vision, nausea, vomiting, sores in mouth or on lips.
D = Dacarbazine, acts like an alkylating agent. It stops the growth of cancer cells, causing cells to die.
More common side effects: Decreased white blood cell count with increased risk of infection, decreased platelet count with increased risk of bleeding, Nausea, Vomiting, Loss of appetite, Irritation of vein used for giving the drug, Flu-like illness up to 7 days after receiving the drug (tiredness, headache, muscle aches, fever, stuffy nose), Hair loss.
Less common side effects: Taste changes, including metallic taste of foods, Hardening of vein used for giving the drug, tiredness (fatigue.
Rare side Effects: Diarrhea, facial flushing, liver toxicity, redness and itching at injection site.
After reading all that... you wonder how bad it's going to be? The doctor said that Matt was going to start feeling better than he had been only a few days after his first treatment. How is that possible when you read how bad the side effects are... not to mention the general idea you have when you hear "chemo".
I am happy to say that Matt did really well after his first treatment. He was REALLY tired. We stopped to pick up some nausea medication on the way home: Prochlorperazine. We got home and we watched TV in the living room and then Matt went to bed. I think he stayed in bed for much of the next 3-4 days, until about Sunday. He didn't come out much, only to eat and drink and put the kids to bed with me, then he'd watch some TV and go back to bed. He wasn't throwing up. He wasn't feeling that nauseous using the Prochlorprazine. Taking it made him non-functional however. He said he'd rather not take them. Matt will ask to try something else next time. Matt was a little itchy on his torso the following week and developed some hives, but it wasn't too bad he says.
Also, his lymphoma symptoms (night sweats, fever and loss of appetite) completely disappeared the following day!!! He really was feeling much better than he had in weeks. It truly is incredible!
Still, it's hard seeing him so exhausted and not being able to participate in everyday activities...
I went with Matt for his first chemo treatment. They took his weight, temperature, blood pressure and pulse as we walked into the office. A private room opened up just as we got there. The room is small, has a comfy recliner for Matt and a not so comfy regular chair for me. There's a TV hanging in a corner and an IV bag holder with pump next to the recliner. Mary-Ann comes in to access the port and draws some blood for the CBC (Complete Blood Count) and starts a bag of fluids. Wendy unfortunately does not work on Wednesdays. Matt's Treatments will be schedule for every other Tuesday hereafter. Matt's white blood count was a little low at 2.6 (x10\S\3microL) normal range is 4-11. Yet, it's nothing to worry about.
Soon, Mary-Ann gives Matt the anti-nausea medication through his port, this takes about 1/2hour. Then she pushes 3 of the chemo drugs into the port via a syringe, which takes about 15min. and then starts the last chemo drug which hangs in a bag and is administered with the help of an IV pump (Dacarbazine).
A = Adriamycin, is an anthrcycline antibiotic. It stops the growth of cancer cells, causing cells to die.
More common side effects: decreased white blood cell count with increased risk of infection, decreased platelet count with increased risk of bleeding, loss of appetite, darkening of nail beds and skin creases of hands, Hair loss, Nausea, Vomiting.
Less common side effects: Sores in mouth, radiation recall skin changes (does not apply to Matt), Fetal abnormalities if taken while pregnant or if becoming pregnant while on this drug.
Rare side effects: Temporary changes in EKG, Irregular heartbeat, Heart damage with congestive heart failure
B = Bleomycin, is an antibiotic. Interferes with cell division, which results in the cells being destroyed.
More common side effects: Fever and chills, Nausea, Loss of appetite, Hair loss, Sores in mouth or on lips, skin changes, such as darkened, thckened areas of skin or nails, rash, or dry skin peeling at the fingertips.
Less common side effects: Pain at tumor site, Pait at place of injection, irritation of vein used for giving the drug, irritation of lungs.
Rare side effects: Scarring of lung tissue (if ever need surgery tell anesthesiologist you have had Bleomycin. After receiving this drug it is important no to receive pure oxygen (i.e. during surgery), Anaphylactic reaction with decreased blood pressure, confusion, rapid heart rate, wheezing, and facial swelling.
V = Vinblastine, is a plant (vinca) alkaloids. It stops cell division, resulting in cell death.
More common side effects: Decreased white blood cell count with increased risk of infection, decreased platelet count with increased risk of bleeding, Hair loss.
Less common side effects: Constipation, Numbness and tingling in the hands and/or feet related to peripheral nerve irritation.
Rare side effects: Depression, Headache, jaw pain, difficulty emptying bladder, increased heart rate, dizziness when changing position, changes in vision, nausea, vomiting, sores in mouth or on lips.
D = Dacarbazine, acts like an alkylating agent. It stops the growth of cancer cells, causing cells to die.
More common side effects: Decreased white blood cell count with increased risk of infection, decreased platelet count with increased risk of bleeding, Nausea, Vomiting, Loss of appetite, Irritation of vein used for giving the drug, Flu-like illness up to 7 days after receiving the drug (tiredness, headache, muscle aches, fever, stuffy nose), Hair loss.
Less common side effects: Taste changes, including metallic taste of foods, Hardening of vein used for giving the drug, tiredness (fatigue.
Rare side Effects: Diarrhea, facial flushing, liver toxicity, redness and itching at injection site.
After reading all that... you wonder how bad it's going to be? The doctor said that Matt was going to start feeling better than he had been only a few days after his first treatment. How is that possible when you read how bad the side effects are... not to mention the general idea you have when you hear "chemo".
I am happy to say that Matt did really well after his first treatment. He was REALLY tired. We stopped to pick up some nausea medication on the way home: Prochlorperazine. We got home and we watched TV in the living room and then Matt went to bed. I think he stayed in bed for much of the next 3-4 days, until about Sunday. He didn't come out much, only to eat and drink and put the kids to bed with me, then he'd watch some TV and go back to bed. He wasn't throwing up. He wasn't feeling that nauseous using the Prochlorprazine. Taking it made him non-functional however. He said he'd rather not take them. Matt will ask to try something else next time. Matt was a little itchy on his torso the following week and developed some hives, but it wasn't too bad he says.
Also, his lymphoma symptoms (night sweats, fever and loss of appetite) completely disappeared the following day!!! He really was feeling much better than he had in weeks. It truly is incredible!
Still, it's hard seeing him so exhausted and not being able to participate in everyday activities...
Wednesday, September 2, 2009
6. Our 1st Appointment with the Oncologist
Tuesday, July 28th, 2009
Our Appointment with Dr. Gribbin at Cancer & Hematology Centers of Western Michigan was scheduled for 12pm. Dr. VanWylen our surgeon refered us to Dr. Gribbin.
In the last two weeks I had been reading a lot of stuff on-line. Which is good. But one of the things I often read was that this period is a time of big decision making. So, when we were refered to Dr. Gribbins, you wonder: why him? Where should we go? What cancer center is the best? Do we need to go to Ann Arbor?
And then you have others giving you advice and opinions. As the spouce of the patient who is too sick to care that much, you wonder and worry... and feel like YOU are ultimately responsible for making the RIGHT decision.
Well, not that I feel like I have to justify to you (the reader) my decision to go with the flow, but I feel that I will always have to reassure myself that we are doing the right thing, for all the right reasons. I didn't look around much, once Dr. VanWylen made the decision for us.
Dr. Gribbin is local. He works out of the Cancer & Hematology Center right here in Holland. This is important because we have young children and I didn't want our family to be separated for long periods of time. This is hard enough as it is. Also, Dr. Gribbin works at the Lack's Cancer Center at St. Mary's in Grand Rapids, a state of the art Cancer center with all the fancy equipment and all the right resources. We can see him there if we need to. That's also where they have the super fancy PET/CT scan machine. Further, Dr. Gribbin is a graduate of the University of Illinois College of Medicine in Chicago where he completed his internship and residency in Internal Medicine. He completed a fellowship in Hematology/Oncology at the University of Michigan Medical Center in Ann Arbor. He is board certified in Internal Medicine, Medical Oncology and Hematology. Dr. Gribbin is a member of the American Society of Hematology, the American Society of Clinical Oncology, the American Federation for Clinical Research and the American Association for Caner Research. He is currently Medical Director of the St. Mary's Cancer Center. He served as Assistant Professor of Medicine at the University of Michigan Medical Center, Ann Arbor prior to joining Cancer and Hematology Centers of Western Michigan in 1998.
...I think he's qualified... don't you agree?
Mary, Matt's mother, met us outside the office building and we walked in together for our appointment. I was happy she was going with us, because I knew I wouldn't want to have to repeat everything the Dr. told us nor want to try to answer question I hadn't thought of asking. On the way to the examination room the nurse stopped to take Matt's temperature, weight (175lbs, he had lost nearly 20lbs in the last 7 weeks), and height. We were asked to wait in the room for the Nurse Practicioner. It's really an odd room. There is no desk, no counter space, just an exam table pushed up into a corner and 5 black chairs. Two chairs on each wall in an L shape on the opposite corner of the room. One chair waiting for the doctor. You'd expect a group therapy session about to begin. The Nurse Practicioner walked in. A short stout lady, about 10 years older than us with a Jay Lenno haircut. The younger version: black hair with the white stripe (opposed to the look he is sporting now: grey hair with black stripe). She said "Hello", introduced herself and the frst question she asked Matt was if he knew why he was there. Strange. Matt answered, because he has Hodgkin's Lymphoma. She explained that she asks, because she'd had patients come in for their first visit not knowing that they had cancer, and that she'd prefer not to start talking about it as if they knew, when they didn't. Hmm.
So, we gave her a brief history and then Dr. Gribbin came in. I liked him. He reminds me of Anthony Hopkin's and I do not mean as Hannibal Lector. He seems very sophisticated and makes you feel like he's smart enough to take care of the love your life. He listens. He really listens well. When Matt was done talking he explained to us that Matt has stage IVB Hogkin's Lymphoma, Nodular Sclerosing. Stage four, because the PET scan shows that Matt has cancer in Lymphnodes above and below the diaphragm and in the bone of his spine and on a rib bone and in the spleen. He suspects that it is also in his bone marrow. We'll find out after they do a bone marrow biospy. The largest tumor is 3.4 x 1.6 cm in diameter. This is good. The doctor said he would have expected to see something larger, based on how wide spread it is (yeah good news!).
The recommended treatment is ABVD every other week, for 3 months (=3cycles = 6 treatments). Then, Matt will have another PET scan. If it's clean he'll go another 3 months. If it still shows signs of cancer, he'll have chemo for another 3 months and then have another PET scan.
O.k. at this point I'm in a huge fog. Honestly, initially I didn't catch half of the above. I had to ask him about this at a later appointment again. I was still trying to wrap my mind around the fact that Matt has stage 4 cancer. However, the prognosis is like none other. This really is a very treatable cancer even in advanced stages you have a 2/3 (66%) chance of ending up cured in 5 years. Note: when cancer is gone you are in remission after one year, after 5 years you are considered cured!
Matt is going to receive his first chemo treatment tomorrow. Now that's fast for once! Thank goodness!
Mary left after this portion of our appointment. I felt bad that she had to drive home all by herself after hearing the news about Matt having stage 4. Honestly, I am really glad she was there to hear the news from the doctor, because I wouldn't have wanted to have to tell her that myself...
Matt went to another room to have the bone marrow biopsy performed. I chose not to be there. I was there for the lymph node, but the bone marrow biopsy is supposed to be very painful, and I just couldn't take any more of seeing Matt suffer. I do think that he enjoyed the alone time while he was waiting for the Dr. I don't know what he was thinking or feeling. I'm sure he's scared. I am. I got to wait in the family lounge. It was quiet. The room has huge windows and the sky was blue, broken up by white fluffy clouds. My head was spinning. It's the uncertainty of what's going to come next that is the difficult part.
I had to talk to the financial adviser. If you have a deductible or out of pocket you are responsible for, you owe it the day of treatment. "Luckily" we have already met both and everything is "free" for the rest of the year. Thank goodness for good insurance! Each chemo treatment is about $1200.
We met Wendy our nurse. Matt's nurse, but she's sooo nice I'd like to claim her, too. Matt sees the same nurse for each treatment. That's awesome, especially since we love Wendy!
I can't wait for tomorrow. The doctor said that after a few days after the first treatment Matt's fevers and night sweats would go away. That means I should be able to move back into my own bed very soon! Yes, I've been sleeping in Hailey's bed for the last 3-4 weeks now. Hailey sleeps on the crib mattress we put on her bedroom floor. She's enjoying the sleepovers. I miss Matt.
Let's see how Chemo goes tomorrow. Oh, yes they said Matt would start loosing his hair in 2 1/2 weeks. Who cares - it'll grow back. I'm sure Matt cares... but hey, he was loosing it anyway ;0)
Our Appointment with Dr. Gribbin at Cancer & Hematology Centers of Western Michigan was scheduled for 12pm. Dr. VanWylen our surgeon refered us to Dr. Gribbin.
In the last two weeks I had been reading a lot of stuff on-line. Which is good. But one of the things I often read was that this period is a time of big decision making. So, when we were refered to Dr. Gribbins, you wonder: why him? Where should we go? What cancer center is the best? Do we need to go to Ann Arbor?
And then you have others giving you advice and opinions. As the spouce of the patient who is too sick to care that much, you wonder and worry... and feel like YOU are ultimately responsible for making the RIGHT decision.
Well, not that I feel like I have to justify to you (the reader) my decision to go with the flow, but I feel that I will always have to reassure myself that we are doing the right thing, for all the right reasons. I didn't look around much, once Dr. VanWylen made the decision for us.
Dr. Gribbin is local. He works out of the Cancer & Hematology Center right here in Holland. This is important because we have young children and I didn't want our family to be separated for long periods of time. This is hard enough as it is. Also, Dr. Gribbin works at the Lack's Cancer Center at St. Mary's in Grand Rapids, a state of the art Cancer center with all the fancy equipment and all the right resources. We can see him there if we need to. That's also where they have the super fancy PET/CT scan machine. Further, Dr. Gribbin is a graduate of the University of Illinois College of Medicine in Chicago where he completed his internship and residency in Internal Medicine. He completed a fellowship in Hematology/Oncology at the University of Michigan Medical Center in Ann Arbor. He is board certified in Internal Medicine, Medical Oncology and Hematology. Dr. Gribbin is a member of the American Society of Hematology, the American Society of Clinical Oncology, the American Federation for Clinical Research and the American Association for Caner Research. He is currently Medical Director of the St. Mary's Cancer Center. He served as Assistant Professor of Medicine at the University of Michigan Medical Center, Ann Arbor prior to joining Cancer and Hematology Centers of Western Michigan in 1998.
...I think he's qualified... don't you agree?
Mary, Matt's mother, met us outside the office building and we walked in together for our appointment. I was happy she was going with us, because I knew I wouldn't want to have to repeat everything the Dr. told us nor want to try to answer question I hadn't thought of asking. On the way to the examination room the nurse stopped to take Matt's temperature, weight (175lbs, he had lost nearly 20lbs in the last 7 weeks), and height. We were asked to wait in the room for the Nurse Practicioner. It's really an odd room. There is no desk, no counter space, just an exam table pushed up into a corner and 5 black chairs. Two chairs on each wall in an L shape on the opposite corner of the room. One chair waiting for the doctor. You'd expect a group therapy session about to begin. The Nurse Practicioner walked in. A short stout lady, about 10 years older than us with a Jay Lenno haircut. The younger version: black hair with the white stripe (opposed to the look he is sporting now: grey hair with black stripe). She said "Hello", introduced herself and the frst question she asked Matt was if he knew why he was there. Strange. Matt answered, because he has Hodgkin's Lymphoma. She explained that she asks, because she'd had patients come in for their first visit not knowing that they had cancer, and that she'd prefer not to start talking about it as if they knew, when they didn't. Hmm.
So, we gave her a brief history and then Dr. Gribbin came in. I liked him. He reminds me of Anthony Hopkin's and I do not mean as Hannibal Lector. He seems very sophisticated and makes you feel like he's smart enough to take care of the love your life. He listens. He really listens well. When Matt was done talking he explained to us that Matt has stage IVB Hogkin's Lymphoma, Nodular Sclerosing. Stage four, because the PET scan shows that Matt has cancer in Lymphnodes above and below the diaphragm and in the bone of his spine and on a rib bone and in the spleen. He suspects that it is also in his bone marrow. We'll find out after they do a bone marrow biospy. The largest tumor is 3.4 x 1.6 cm in diameter. This is good. The doctor said he would have expected to see something larger, based on how wide spread it is (yeah good news!).
The recommended treatment is ABVD every other week, for 3 months (=3cycles = 6 treatments). Then, Matt will have another PET scan. If it's clean he'll go another 3 months. If it still shows signs of cancer, he'll have chemo for another 3 months and then have another PET scan.
O.k. at this point I'm in a huge fog. Honestly, initially I didn't catch half of the above. I had to ask him about this at a later appointment again. I was still trying to wrap my mind around the fact that Matt has stage 4 cancer. However, the prognosis is like none other. This really is a very treatable cancer even in advanced stages you have a 2/3 (66%) chance of ending up cured in 5 years. Note: when cancer is gone you are in remission after one year, after 5 years you are considered cured!
Matt is going to receive his first chemo treatment tomorrow. Now that's fast for once! Thank goodness!
Mary left after this portion of our appointment. I felt bad that she had to drive home all by herself after hearing the news about Matt having stage 4. Honestly, I am really glad she was there to hear the news from the doctor, because I wouldn't have wanted to have to tell her that myself...
Matt went to another room to have the bone marrow biopsy performed. I chose not to be there. I was there for the lymph node, but the bone marrow biopsy is supposed to be very painful, and I just couldn't take any more of seeing Matt suffer. I do think that he enjoyed the alone time while he was waiting for the Dr. I don't know what he was thinking or feeling. I'm sure he's scared. I am. I got to wait in the family lounge. It was quiet. The room has huge windows and the sky was blue, broken up by white fluffy clouds. My head was spinning. It's the uncertainty of what's going to come next that is the difficult part.
I had to talk to the financial adviser. If you have a deductible or out of pocket you are responsible for, you owe it the day of treatment. "Luckily" we have already met both and everything is "free" for the rest of the year. Thank goodness for good insurance! Each chemo treatment is about $1200.
We met Wendy our nurse. Matt's nurse, but she's sooo nice I'd like to claim her, too. Matt sees the same nurse for each treatment. That's awesome, especially since we love Wendy!
I can't wait for tomorrow. The doctor said that after a few days after the first treatment Matt's fevers and night sweats would go away. That means I should be able to move back into my own bed very soon! Yes, I've been sleeping in Hailey's bed for the last 3-4 weeks now. Hailey sleeps on the crib mattress we put on her bedroom floor. She's enjoying the sleepovers. I miss Matt.
Let's see how Chemo goes tomorrow. Oh, yes they said Matt would start loosing his hair in 2 1/2 weeks. Who cares - it'll grow back. I'm sure Matt cares... but hey, he was loosing it anyway ;0)
Tuesday, September 1, 2009
5. Matt's first PET scan
Monday, July 27th, 2009
Matt stuck religiously to the low carbohydrate diet yesterday! It wasn't easy... it's amazing how many carbs you eat in a day. And he did not eat breakfast or drink anything all morning. He was getting dehydrated and was feeling lousy, so I called St. Mary's to verify that he wasn't supposed to drink anything that morning. It really didn't make sense to me... but after what happened on Friday, we were sticking to the instructions. We weren't up to any more delays or unnecessary excitement.
We arrive at the hospital and they take us back to the prep rooms. BTW, Matt's clothes are soaked. He broke a fever in the car and he's sweating through his jeans. The radiology tech offers Matt a diet Pepsi, water, tee anything he'd like (without sugar). We were confused! He CAN drink? The tech told us that it's easier to tell people not to drink or eat anything at all, otherwise, they may drink something they aren't supposed to. Ughhh, nice. Easier when you're not already completely dehydrated from drenching night sweats!
We get back to the prep rooms. WOW! Now that's the place to be. A recliner for Matt and a super comfy chair with FOOT STOOL for me. Our Private room featured a flat screen TV, climate control and dimmable lights. Jackpot of hospital prep rooms. Matt's Port was accessed for the first time. It was still sore and tender to the touch. Think about it, they cut him open and put the plastic disk between the layers of his skin and then stuck a tube into his vein... I'm sure they weren't really gentle about it during the surgery. Surgeons never look gentle on TV. Ha.
Matt also had to drink a glass of barium. His favorite! yuck! That's for the CT scan part of it.
For more info on PET scans: http://www.petscaninfo.com/zportal/portals/pat/cancer
Matt goes for the scan and about 45min. later he opens the door to the room and is taking his shirt off. What??? He says they had a mishap with the port. He says "My shirt is full of blood." I'm confused, they had a mishap and Matt's walking around? Alone? What the heck? He sits down and grabs the clear tubing and closes it. There is air in the tube. The radiology tech (not the one who messed up) comes into the room and calls a nurse. Only nurses are allowed to access the port. Techs are allowed to connect to the tubing that is connected to the port by the nurse. Obviously, the tech didn't even know how to do that, since he disconnected the tubing in a spot where there wasn't a valve to prevent air from getting into the tube. Now, we had a problem: blood clotting. The nurse was nervous that we might loose the Port if he doesn't get the clot resolved... I'm worried about what blood clots could do to Matt.
Oh my, nothing is going easy. Everything is a hassle. Every step is laced with unnecessary excitement. On top of all this the nurse is concerned that Matt had taken the bandage off early and has been showering. Oh my goodness, can they give us anything else to worry about?
The nurse realizes that the tubing outside the port is clogged and that the tube inside Matt is clear. Matt doesn't need a blood thinner and the Port is fine. We get to go home. Finally.
Tomorrow we get to see the Oncologist. Perhaps, with all the "little" things that have been going wrong, the "bigger" things will go well... We are supposed to find out what stage Matt's cancer is.
For staging information go here: http://www.nci.nih.gov/cancertopics/wyntk/hodgkin/page6
The stages of Hodgkin lymphoma are as follows:
Matt stuck religiously to the low carbohydrate diet yesterday! It wasn't easy... it's amazing how many carbs you eat in a day. And he did not eat breakfast or drink anything all morning. He was getting dehydrated and was feeling lousy, so I called St. Mary's to verify that he wasn't supposed to drink anything that morning. It really didn't make sense to me... but after what happened on Friday, we were sticking to the instructions. We weren't up to any more delays or unnecessary excitement.
We arrive at the hospital and they take us back to the prep rooms. BTW, Matt's clothes are soaked. He broke a fever in the car and he's sweating through his jeans. The radiology tech offers Matt a diet Pepsi, water, tee anything he'd like (without sugar). We were confused! He CAN drink? The tech told us that it's easier to tell people not to drink or eat anything at all, otherwise, they may drink something they aren't supposed to. Ughhh, nice. Easier when you're not already completely dehydrated from drenching night sweats!
We get back to the prep rooms. WOW! Now that's the place to be. A recliner for Matt and a super comfy chair with FOOT STOOL for me. Our Private room featured a flat screen TV, climate control and dimmable lights. Jackpot of hospital prep rooms. Matt's Port was accessed for the first time. It was still sore and tender to the touch. Think about it, they cut him open and put the plastic disk between the layers of his skin and then stuck a tube into his vein... I'm sure they weren't really gentle about it during the surgery. Surgeons never look gentle on TV. Ha.
Matt also had to drink a glass of barium. His favorite! yuck! That's for the CT scan part of it.
For more info on PET scans: http://www.petscaninfo.com/zportal/portals/pat/cancer
Matt goes for the scan and about 45min. later he opens the door to the room and is taking his shirt off. What??? He says they had a mishap with the port. He says "My shirt is full of blood." I'm confused, they had a mishap and Matt's walking around? Alone? What the heck? He sits down and grabs the clear tubing and closes it. There is air in the tube. The radiology tech (not the one who messed up) comes into the room and calls a nurse. Only nurses are allowed to access the port. Techs are allowed to connect to the tubing that is connected to the port by the nurse. Obviously, the tech didn't even know how to do that, since he disconnected the tubing in a spot where there wasn't a valve to prevent air from getting into the tube. Now, we had a problem: blood clotting. The nurse was nervous that we might loose the Port if he doesn't get the clot resolved... I'm worried about what blood clots could do to Matt.
Oh my, nothing is going easy. Everything is a hassle. Every step is laced with unnecessary excitement. On top of all this the nurse is concerned that Matt had taken the bandage off early and has been showering. Oh my goodness, can they give us anything else to worry about?
The nurse realizes that the tubing outside the port is clogged and that the tube inside Matt is clear. Matt doesn't need a blood thinner and the Port is fine. We get to go home. Finally.
Tomorrow we get to see the Oncologist. Perhaps, with all the "little" things that have been going wrong, the "bigger" things will go well... We are supposed to find out what stage Matt's cancer is.
For staging information go here: http://www.nci.nih.gov/cancertopics/wyntk/hodgkin/page6
The stages of Hodgkin lymphoma are as follows:
- Stage I: The lymphoma cells are in one lymph node group (such as in the neck or underarm). Or, if the lymphoma cells are not in the lymph nodes, they are in only one part of a tissue or an organ (such as the lung).
- Stage II: The lymphoma cells are in at least two lymph node groups on the same side of (either above or below) the diaphragm. Or, the lymphoma cells are in one part of a tissue or an organ and the lymph nodes near that organ (on the same side of the diaphragm). There may be lymphoma cells in other lymph node groups on the same side of the diaphragm.
- Stage III: The lymphoma cells are in lymph nodes above and below the diaphragm. Lymphoma also may be found in one part of a tissue or an organ (such as the liver, lung, or bone) near these lymph node groups. It may also be found in the spleen.
- Stage IV: Lymphoma cells are found in several parts of one or more organs or tissues. Or, the lymphoma is in an organ (such as the liver, lung, or bone) and in distant lymph nodes.
- Recurrent: The disease returns after treatment.
- A: You have not had weight loss, drenching night sweats, or fevers.
- B: You have had weight loss, drenching night sweats, or fevers.
4. A nice weekend with the family
Saturday, July 25th, 2009
Matt is feeling a lot better after receiving fluids last tuesday at the ER and again yesterday when he had the port implanted. Surprisingly, he feels really good considering he had surgery yesterday!
I was going to take the girls and Omi to Aunt Roses/Cousin Jim's Party with my Mom and Roger. Matt decided he wanted to go, too. Shocking! He had spent the whole mornging sleeping and when I was getting into the car - kids were packed and in their seats - he shoo's me out of the driver's seat! Shocking!
Well, Roger and Matt discussed how they were going to get there and Roger leaves our driveway heading East and Matt heads West... what's going on? He was conviced that they were driving through South Haven and he got upset. I called my mom on her cell and she told me they discussed going the Roger was headed. Anyway, Matt wasn't himself. He got so angry. I imagine he feels like crap - physically as well as emotionally.
We had a good time at the Party. Matt took it easy, he actually took a nap in the camping chair in the shade, while the girls, Brandon and Kyle and I went for a wonderful walk around the lake. Those boys are REALLY great kids. We left early and to my surprise Matt drove, again. I think he's tired of being driven and being taken care of... I feel for him.
We get home and Matt takes the bandage (clear celophane wrap) off the incision from his Port implant, before he takes a shower. Those were the instructions he had received for the care of the lymph node incision, and since the nurse who checked us out last night, wasn't sure what we were supposed to do (it was late and she had just joined the party), he decided to do what he was told to do last time. Take the bandage off after 24hrs. It only made sense.
Sunday, July 26th, 2009
After another night of bad sweats, fever, headaches and sleeplessness, Matt felt well enought go to Grandville for a haircut. I took the girls to the Treehouse play area while he got his haircut. Walking through the mall was not an easy task for him, he got exhausted and we went home. All in all it was nice to get out of the house.
Matt is feeling a lot better after receiving fluids last tuesday at the ER and again yesterday when he had the port implanted. Surprisingly, he feels really good considering he had surgery yesterday!
I was going to take the girls and Omi to Aunt Roses/Cousin Jim's Party with my Mom and Roger. Matt decided he wanted to go, too. Shocking! He had spent the whole mornging sleeping and when I was getting into the car - kids were packed and in their seats - he shoo's me out of the driver's seat! Shocking!
Well, Roger and Matt discussed how they were going to get there and Roger leaves our driveway heading East and Matt heads West... what's going on? He was conviced that they were driving through South Haven and he got upset. I called my mom on her cell and she told me they discussed going the Roger was headed. Anyway, Matt wasn't himself. He got so angry. I imagine he feels like crap - physically as well as emotionally.
We had a good time at the Party. Matt took it easy, he actually took a nap in the camping chair in the shade, while the girls, Brandon and Kyle and I went for a wonderful walk around the lake. Those boys are REALLY great kids. We left early and to my surprise Matt drove, again. I think he's tired of being driven and being taken care of... I feel for him.
We get home and Matt takes the bandage (clear celophane wrap) off the incision from his Port implant, before he takes a shower. Those were the instructions he had received for the care of the lymph node incision, and since the nurse who checked us out last night, wasn't sure what we were supposed to do (it was late and she had just joined the party), he decided to do what he was told to do last time. Take the bandage off after 24hrs. It only made sense.
Sunday, July 26th, 2009
After another night of bad sweats, fever, headaches and sleeplessness, Matt felt well enought go to Grandville for a haircut. I took the girls to the Treehouse play area while he got his haircut. Walking through the mall was not an easy task for him, he got exhausted and we went home. All in all it was nice to get out of the house.
3. The story of the Port
Matt gets a call that wakes him out of dead sleep. He asks the nurse to wait until he gets a pen and paper and sits down at the dining room table to take notes. The nurse called to give Matt details regarding the Port implant. He should wear loose clothing, that's all. She confirms the appointment is at
St. Mary's calls to schedule the PET scan. Our appointment is on Monday arrival at
Matt is scheduled to have his port implanted. What is a port? We have no clue, so that morning I go online and look up Ports. Hhm... I find a video on you-tube that shows how a port is accessed. Hailey, our little 'scientist' watched the video with me. She was very curious and did not mind watching someone get poked with a needle. I was quite surprised. Here is a link to a youtube video showing how a port is accessed, in case you are curious: http://www.youtube.com/watch?v=AdD3KSGJOHI&feature=related
Here is a link that shows the PowerPort Matt has implanted: http://www.bardaccess.com/port-powerport.php
We drop the kids off at my mom's house and make our way up to
Ugh... what now?
How is putting the port in any different than taking a whole lymph node out? They did that right in the office with a local anesthesia. Well, it is different. He was sedated so he'd sleep through the procedure. It is truly a minor surgery. Who would have thought? Well, we did not know.
Long story short: Dr. VanWylen is an awesome person and so is his wife. He called his wife to see if he could do Matt's surgery at
The surgery/implant went well, no complications. We had to wait until someone from imaging could come up and take chest x-rays and for a radiologist to review the x-ray to confirm it was implanten and assembled correctly. Then we were released and had to stop at the pharmacy and then got home at 10:30pm. Thank you mom for watching the kids all afternoon, and thank you Mary for putting them to bed and watching them until we got home.
What a long day... but we had an awesome surgeon who took great care of Matt and that made all the difference.
2. Taking Matt to the ER
Tuesday, July 21st, 2009 (continued)
We leave the house a little after 4pm. My mom has the kids. We've got the Garmin set to lead the way to St. Mary's in Grand Rapids. We get there and Matt is taken to an Emergency Room bed. Dr. Brandt comes to see us and orders an IV to be started with some anti-nausea medication and fluids. They collect blood samples and a urine sample. He's concerned, after we tell him the ordeal that has brought us to this point. He considers keeping Matt over night for observation, but wants to talk to Dr. Gribbin first. Dr. Gribbin is the oncologist who we are scheduled to see next Tuesday. Matt immediately starts feeling better after receiving fluids. He had been completely dehydrated. Although, he had been trying to drink a lot, he couldn't make up for the amount of fluids and electrolytes he'd been loosing every night sweating. Dr. Gribbin told Dr. Brandt that they couldn't do anything for Matt. The symptoms he's experiencing from the Lymphoma won't start getting better until he starts his chemo treatment. Matt is released from the hospital feeling 1000 times better than when we got there. The visit at the ER was so worth it.
We leave the house a little after 4pm. My mom has the kids. We've got the Garmin set to lead the way to St. Mary's in Grand Rapids. We get there and Matt is taken to an Emergency Room bed. Dr. Brandt comes to see us and orders an IV to be started with some anti-nausea medication and fluids. They collect blood samples and a urine sample. He's concerned, after we tell him the ordeal that has brought us to this point. He considers keeping Matt over night for observation, but wants to talk to Dr. Gribbin first. Dr. Gribbin is the oncologist who we are scheduled to see next Tuesday. Matt immediately starts feeling better after receiving fluids. He had been completely dehydrated. Although, he had been trying to drink a lot, he couldn't make up for the amount of fluids and electrolytes he'd been loosing every night sweating. Dr. Gribbin told Dr. Brandt that they couldn't do anything for Matt. The symptoms he's experiencing from the Lymphoma won't start getting better until he starts his chemo treatment. Matt is released from the hospital feeling 1000 times better than when we got there. The visit at the ER was so worth it.
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