You know, despite all my whining and terrors, I really believe that Terry is going to be okay. Maybe because I refuse to entertain the idea that he will not be my partner forever. I stay awake until I drop, but I sleep.
Worked 8 hrs today - when I got home, Terry and Krista were in Ann Arbor, visiting a friend of hers who had bariatric surgery. So I curled up and took a nap. When I woke up, they were staring down at me, saying boy, you look awful. You look exhausted. Please, go back to sleep.
Hmmm, maybe I need some more rest.
Terry is having bouts of insomnia. But he is napping a lot. The chemo/rads really took it out of him. But his face is looking better - rested and ready. And, despite the fact that Cisplatin and 5FU have hair loss as an SE, he really needs a hair cut, and he just lost a little around the hair line (Wouldn't you know!).
Today, we are having a good day.
Saturday, October 31, 2009
Friday, October 30, 2009
Scheduled Terry's surgery
Terry scheduled his surgery today. November 17th. He extended it out a week, so I'll be done with my project at work.
I have a follow-up appointment with my endocrinologist. I made it 6 weeks ago. I told doc that if her appointment conflicted with DH's surgery, we'd have to reschedule. That can take like 8 weeks - guess what day.
You're right. I'll call and reschedule Monday.
I have a follow-up appointment with my endocrinologist. I made it 6 weeks ago. I told doc that if her appointment conflicted with DH's surgery, we'd have to reschedule. That can take like 8 weeks - guess what day.
You're right. I'll call and reschedule Monday.
Thursday, October 29, 2009
Post Chemo Testing
Terry had a CAT scan yesterday to see how the chemo and radiation affected his tumor. We had an appointment with Dr Oncologist, for a check-up. Basically, he's thrilled with how well T survived the treatment. No weight loss, his kidneys are okay. Allright we said, how did the CAT scan come out - oh, well, you only had that today. Well, if this appointment is to get the follow-up reports, why did you schedule his appointments and CAT scan on the same day? When the results won't be available?
Duh shrug.
The worst part of the entire chemo experience has been the constant screw-ups by the schedulers. I hope they are very poorly paid; they certainly work as though they are.
But, I said, I took the afternoon off, so we could be together when we got the results - he called downstairs and asked them to expeditite reading the scan - Nurse Heidi called in the evening - the scan is good; no progression, tumor is there, but nothing else. They are assuming that, when surgery takes place, they will find the tumor is by and large dead.
The one piece of news we weren't expecting was that we don't see this doctor anymore - Terry's primary oncologist will be his surgeon. They will do physical checks, and schedule scans and such. So odd - my BC oncologist is my hem onc, because I'm on tamoxifen. We were surprised.
So, on to surgery. Next appointment, next week. T is not looking forward to this.
Duh shrug.
The worst part of the entire chemo experience has been the constant screw-ups by the schedulers. I hope they are very poorly paid; they certainly work as though they are.
But, I said, I took the afternoon off, so we could be together when we got the results - he called downstairs and asked them to expeditite reading the scan - Nurse Heidi called in the evening - the scan is good; no progression, tumor is there, but nothing else. They are assuming that, when surgery takes place, they will find the tumor is by and large dead.
The one piece of news we weren't expecting was that we don't see this doctor anymore - Terry's primary oncologist will be his surgeon. They will do physical checks, and schedule scans and such. So odd - my BC oncologist is my hem onc, because I'm on tamoxifen. We were surprised.
So, on to surgery. Next appointment, next week. T is not looking forward to this.
Thursday, October 22, 2009
Radiation Affecting Swallowing
Terry reports that he can see why people lose weight after treatment. He says that he has to work to swallow food, that it's always hard to get stuff down. Not painful, just a lot of work.
The MuscleMilk is providing a large share of his calories. Krista is hovering a lot - she is encouraging him to eat when she has something - keeping him healthy. He hasn't lost any weight -- Nurse Heidi is really pleased.
The MuscleMilk is providing a large share of his calories. Krista is hovering a lot - she is encouraging him to eat when she has something - keeping him healthy. He hasn't lost any weight -- Nurse Heidi is really pleased.
Wednesday, October 21, 2009
Earning Comp Time - Did I mention I'm exhausted?
From now until the end of the month, I can earn comp time - I really need it for Terry's surgery.
I can work 10 hrs per day to get 2 extra hours, and work Saturdays. That means I can get 2 comp days a week.
If I live.
I won't make the whole thing, had to see allergist. She cracked me up - she said, let's not start weaning you off Theophyllin while you're under this much stress. And gave me regular flu vaccine, and the H1N1. Evidently, I'm really high risk.
But, if I can get a week or so of comp time, this will really help us.
So, I guess it's a good thing that these work tasks are really slow - everything in each document has to be second-guessed.
I give thanks that I can earn for my family.
I can work 10 hrs per day to get 2 extra hours, and work Saturdays. That means I can get 2 comp days a week.
If I live.
I won't make the whole thing, had to see allergist. She cracked me up - she said, let's not start weaning you off Theophyllin while you're under this much stress. And gave me regular flu vaccine, and the H1N1. Evidently, I'm really high risk.
But, if I can get a week or so of comp time, this will really help us.
So, I guess it's a good thing that these work tasks are really slow - everything in each document has to be second-guessed.
I give thanks that I can earn for my family.
Treatment's over - He's shot!
Terry is still getting infusions to protect his kidneys. Nurse Heidi said that she was really pleased with his blood work - of course, he's not like me, and doesn't demand to know exactly what that means. But, he's doing good.
That makes me really happy - I don't want cancer treatment to kill him!
Most of the people I know who have been through cancer treatment are younger. And they don't have to face as many of the issues related to Type II diabetes, kidney, heart issues that us geezers have to face.
Terry is resting and sleeping a lot. The radiation pain is actually there - doesn't prevent him from eating, but he says it's sore. Docs usually expect radiation to continue working for a couple of weeks - so he is experiencing more.
We found this stuff called Muscle Milk. It has higher protein, and less glucose than even the meal plans marketed extensively for diabetics (ok, Glucerna). He says it really tastes good.
That makes me really happy - I don't want cancer treatment to kill him!
Most of the people I know who have been through cancer treatment are younger. And they don't have to face as many of the issues related to Type II diabetes, kidney, heart issues that us geezers have to face.
Terry is resting and sleeping a lot. The radiation pain is actually there - doesn't prevent him from eating, but he says it's sore. Docs usually expect radiation to continue working for a couple of weeks - so he is experiencing more.
We found this stuff called Muscle Milk. It has higher protein, and less glucose than even the meal plans marketed extensively for diabetics (ok, Glucerna). He says it really tastes good.
Sunday, October 18, 2009
Being the spouse
One of the things I've seen on the BC boards that I frequent is that cancer has a profound effect on marriage. And couples either get closer, or really fly apart.
So, I'm trying to be there for everything that I can manage. But, it's really hard. I started this new job in March, and don't like it very much. But the insurance is really good - they cover cancer at 100%. So things like my MRI, and Terry's entire treatment are covered.
And I'm trying to do the right things, but I feel really stressed, and unsupported.
But Terry isn't working now - he is putting himself first, and I totally support this. He's more important than income, but I do feel stressed about money. He only works part-time, but he does bring home breads and salads that stretch our money - so we're down over a thousand a month.
And Krista wrecking the car adds that certain something. Like - Terry wants to pull cash from our savings accounts to pay for the car in full. So we have less monthly expenses. I would rather keep our cash in a stash, just in case things get terrible, and there are no more contracts and no more work. Then the most we would lose would be the second car, and we would be able to pay off the house for another month or two from savings. We haven't decided what to do. And we neither of us have had any time or energy to go shopping for a car, so the meter is ticking on a rental car. I mean, I know I suggested that we do this. But, I'm working here!
I'm also finding that I am relating a bit to the husbands who sit there and play computer games - I mean, here I am, typing away on the computer, when Terry and Krista are sitting in the other room. Together. I feel really out of their close little circle. He was the stay-at-home parent, but what this all means is that she and I don't communicate well.
I've asked Krista to help me - cooking, making sure that Dad doesn't overdo. She interpreted that to mean that she'll sit with Dad, and ignore the dishes and the cooking and the shopping, and I get to do them when I get home. If I don't, the food goes bad, or Terry does the clean-up. And then I get mad. This isn't working.
We made the decision to go to Hawaii - it ate up all my vacation time at work, and it was wonderful. But he's going to be in the hospital for 7-10 days, and then will need intense care at home for likely weeks. And I have 4 hours of vacation. So, they offered comp time at work - 2 extra hours per day, and Saturday, and any overtime on Sunday I want to put in - but only for a few weeks. So all day Sunday I waited for Krista to come downstairs - I had offered to buy her new underwear, thought we could shop together. She also volunteered to walk the dog. Terry called her to walk the dog 3 times before she finally came down, then she went right back to bed. Or whereever it is she goes. And came down after the stores were closed.
I feel so much like the bad guy. And yet, at the same time, none of my needs are getting met here. And I feel like I'm under a whole lot of pressure.
I hope that writing this out takes some of the pressure away.
So, I'm trying to be there for everything that I can manage. But, it's really hard. I started this new job in March, and don't like it very much. But the insurance is really good - they cover cancer at 100%. So things like my MRI, and Terry's entire treatment are covered.
And I'm trying to do the right things, but I feel really stressed, and unsupported.
But Terry isn't working now - he is putting himself first, and I totally support this. He's more important than income, but I do feel stressed about money. He only works part-time, but he does bring home breads and salads that stretch our money - so we're down over a thousand a month.
And Krista wrecking the car adds that certain something. Like - Terry wants to pull cash from our savings accounts to pay for the car in full. So we have less monthly expenses. I would rather keep our cash in a stash, just in case things get terrible, and there are no more contracts and no more work. Then the most we would lose would be the second car, and we would be able to pay off the house for another month or two from savings. We haven't decided what to do. And we neither of us have had any time or energy to go shopping for a car, so the meter is ticking on a rental car. I mean, I know I suggested that we do this. But, I'm working here!
I'm also finding that I am relating a bit to the husbands who sit there and play computer games - I mean, here I am, typing away on the computer, when Terry and Krista are sitting in the other room. Together. I feel really out of their close little circle. He was the stay-at-home parent, but what this all means is that she and I don't communicate well.
I've asked Krista to help me - cooking, making sure that Dad doesn't overdo. She interpreted that to mean that she'll sit with Dad, and ignore the dishes and the cooking and the shopping, and I get to do them when I get home. If I don't, the food goes bad, or Terry does the clean-up. And then I get mad. This isn't working.
We made the decision to go to Hawaii - it ate up all my vacation time at work, and it was wonderful. But he's going to be in the hospital for 7-10 days, and then will need intense care at home for likely weeks. And I have 4 hours of vacation. So, they offered comp time at work - 2 extra hours per day, and Saturday, and any overtime on Sunday I want to put in - but only for a few weeks. So all day Sunday I waited for Krista to come downstairs - I had offered to buy her new underwear, thought we could shop together. She also volunteered to walk the dog. Terry called her to walk the dog 3 times before she finally came down, then she went right back to bed. Or whereever it is she goes. And came down after the stores were closed.
I feel so much like the bad guy. And yet, at the same time, none of my needs are getting met here. And I feel like I'm under a whole lot of pressure.
I hope that writing this out takes some of the pressure away.
The week after last Taxol
Tuesday, Wednesday, Thursday not so bad. Terry went to the infusion center in Canton for his hydration - a nice, small center, with only a few beds and no TVs. For an hour/hour and a half, peace and quiet and a good book. Wouldn't have worked for the previous weeks, as there is no radiation oncology department there. But only a 10 minute drive from the house, instead of 45.
He really likes the nurse practitioner who's in charge. She spent some time talking with him - thinks red-heads are more sensitive to almost everything. So she was watching the place where the PICC was taken out really carefully - put antibiotic cream on it, and a bandage. She chatted with him - think it made him feel better.
Friday he started feeling not quite so good. Guess these are the last side effects - more tired and beat down than anything else. Friday they drew some blood - they really are worried about those kidneys. And a new nurse gave him a script for a stronger antibiotic cream.
He went into the main infusion center in Ann Arbor on Saturday - seems that the Canton center is closed on weekends. His favorite nurse was working there - he was glad to see her. She looked at him, and said - what are you drinking? He said coffee. He's been drinking a lot of coffee throughout infusions - nobody said it was a bad idea, and he really only drinks coffee when someone else is brewing it - I think it has something to do with making coffee at Panera all the time. Seems caffinated coffee is a diuretic, so he's been peeing more than he is getting in the infusions. Great. WHY DIDN'T ANYBODY SAY ANYTHING!
Oh, and she put him on a regular antibiotic. The PICC hole red area is getting a little bigger.
So, today is Sunday. He crashed when he got home. He's been sleeping pretty much since. I'm glad that I've read descriptions of how women I know feel after Taxol, so I can have some idea how he's feeling. Because all he's saying to me is he's feeling better.
Monday he goes in to get a blood draw, and talks to Heidi, the nurse. She is really honest - told us that the reason that he was having insulin issues was that they weren't following Dr Urbe's protocol with only 2 steroid pills before infusion, but gave him the 6 they use for other cancers. So, it wasn't his body - it was their stupidity (personal opinion). I'm glad that she doesn't lie, but I'm wishing that we'd waited the extra week to see Dr Urbe, instead of accepting a doctor who doesn't do esophageal cancer a lot. Oh, well, it's over, and I don't think any permanent damage was done.
And slapping her wouldn't get us anything. Even though it would make me feel better.
In a way, I'm kind of sorry this is over - next is CT scan, then surgery. I don't want to get results - right now, I can just float on the assumption that the chemo/rads has wiped everything out, and the surgery is just prophylactic. Need the reality to match up to my expectations.
He really likes the nurse practitioner who's in charge. She spent some time talking with him - thinks red-heads are more sensitive to almost everything. So she was watching the place where the PICC was taken out really carefully - put antibiotic cream on it, and a bandage. She chatted with him - think it made him feel better.
Friday he started feeling not quite so good. Guess these are the last side effects - more tired and beat down than anything else. Friday they drew some blood - they really are worried about those kidneys. And a new nurse gave him a script for a stronger antibiotic cream.
He went into the main infusion center in Ann Arbor on Saturday - seems that the Canton center is closed on weekends. His favorite nurse was working there - he was glad to see her. She looked at him, and said - what are you drinking? He said coffee. He's been drinking a lot of coffee throughout infusions - nobody said it was a bad idea, and he really only drinks coffee when someone else is brewing it - I think it has something to do with making coffee at Panera all the time. Seems caffinated coffee is a diuretic, so he's been peeing more than he is getting in the infusions. Great. WHY DIDN'T ANYBODY SAY ANYTHING!
Oh, and she put him on a regular antibiotic. The PICC hole red area is getting a little bigger.
So, today is Sunday. He crashed when he got home. He's been sleeping pretty much since. I'm glad that I've read descriptions of how women I know feel after Taxol, so I can have some idea how he's feeling. Because all he's saying to me is he's feeling better.
Monday he goes in to get a blood draw, and talks to Heidi, the nurse. She is really honest - told us that the reason that he was having insulin issues was that they weren't following Dr Urbe's protocol with only 2 steroid pills before infusion, but gave him the 6 they use for other cancers. So, it wasn't his body - it was their stupidity (personal opinion). I'm glad that she doesn't lie, but I'm wishing that we'd waited the extra week to see Dr Urbe, instead of accepting a doctor who doesn't do esophageal cancer a lot. Oh, well, it's over, and I don't think any permanent damage was done.
And slapping her wouldn't get us anything. Even though it would make me feel better.
In a way, I'm kind of sorry this is over - next is CT scan, then surgery. I don't want to get results - right now, I can just float on the assumption that the chemo/rads has wiped everything out, and the surgery is just prophylactic. Need the reality to match up to my expectations.
Tuesday, October 13, 2009
Terry's done with Chemo!
We have another certificate.
And T got cisplatin - the nurse wasn't going to give it to us, but I guess we begged. Terry's creatinine clearance was only 55%, and they ordinarily give it only when level is above 60%, but the onc made a deal with us - Terry has to go in for hydrating infusions every day until his scans, and he got the chemo.
We were there for 7 hrs - prechemo hydration, premeds, taxol, mannitol, and cisplatin.
And they took off the 5Fu pack! And took out the PICC line.
He took a really nice long warm shower. We're watching the PICC, as it may get infected - it's on the pink side.
And T got cisplatin - the nurse wasn't going to give it to us, but I guess we begged. Terry's creatinine clearance was only 55%, and they ordinarily give it only when level is above 60%, but the onc made a deal with us - Terry has to go in for hydrating infusions every day until his scans, and he got the chemo.
We were there for 7 hrs - prechemo hydration, premeds, taxol, mannitol, and cisplatin.
And they took off the 5Fu pack! And took out the PICC line.
He took a really nice long warm shower. We're watching the PICC, as it may get infected - it's on the pink side.
Sunday, October 11, 2009
Fred's funeral
The best thing about visiting Cancerland is that you get to meet really wonderful people. Among the special people that have been added to my life is the other survivors from breastcancer.org who let me join their Race for the Cure team - Wings of Hope. I wrote about Fred and Neesie last week - Fred's suffering came to an end at the end of the week.
Today was the visitation - 4 of us from the team went, and another survivor who is a dear friend of Neesie's flew in from North Carolina to be there. She cried when she saw us.
This is so unfair - they were only married 8 years - he adopted her kids, and their newest granddaughter was born Monday. So her son couldn't even come to the funeral.
When I got home, my friend Melinda from YSC called to wish Terry good luck in his final chemo. She had a rough weekend. One of her best friends, who is the same age as she is, was diagnosed with brain mets on Friday. She is devastated.
Caring about people can be so hard sometimes.
Today was the visitation - 4 of us from the team went, and another survivor who is a dear friend of Neesie's flew in from North Carolina to be there. She cried when she saw us.
This is so unfair - they were only married 8 years - he adopted her kids, and their newest granddaughter was born Monday. So her son couldn't even come to the funeral.
When I got home, my friend Melinda from YSC called to wish Terry good luck in his final chemo. She had a rough weekend. One of her best friends, who is the same age as she is, was diagnosed with brain mets on Friday. She is devastated.
Caring about people can be so hard sometimes.
Radiation is over!
Terry now has his certificate from the Radiation Oncology department at the U. of M.
He has completed 15 days of twice-a-day treatment, with a continuous infusion of 5Fu going into his arm.
His rad onc is really pleased with him (the man has the no personality, but I trust his professional skills) - they expected T to have more trouble. He warned him that he will continue to cook, so he may get more stomach pains, but, so far, he's doing pretty well.
This is the backbone of his pre-operative treatment - sterilizing the tumor area, zapping any cells that have been out wandering around. When I typed that, I could hear them sizzle in my imagination - see them explode into nothingness.
Monday is his final chemo.
He has completed 15 days of twice-a-day treatment, with a continuous infusion of 5Fu going into his arm.
His rad onc is really pleased with him (the man has the no personality, but I trust his professional skills) - they expected T to have more trouble. He warned him that he will continue to cook, so he may get more stomach pains, but, so far, he's doing pretty well.
This is the backbone of his pre-operative treatment - sterilizing the tumor area, zapping any cells that have been out wandering around. When I typed that, I could hear them sizzle in my imagination - see them explode into nothingness.
Monday is his final chemo.
Monday, October 5, 2009
No cisplatin
But he did get to have insulin, as the chemo is throwing his blood chemistry all to hell and gone.
Terry's been drinking Gatorade - with sugar, to try to stay hydrated, and so his kidneys and his blood glucose are not happy.
Had his infusions at the MedInn - part of the patient hotel has been partially converted to extra infusions rooms - they have a LOT of patients go through there every day. They seem to put the less on-top-of-it nurses out there. The really cool ones are in the infusion center near the docs.
I got in a full day of work, and Krista went to school.
Terry's been drinking Gatorade - with sugar, to try to stay hydrated, and so his kidneys and his blood glucose are not happy.
Had his infusions at the MedInn - part of the patient hotel has been partially converted to extra infusions rooms - they have a LOT of patients go through there every day. They seem to put the less on-top-of-it nurses out there. The really cool ones are in the infusion center near the docs.
I got in a full day of work, and Krista went to school.
Sunday, October 4, 2009
Family melt downs
I think Krista and I are starting to get on Terry's nerves. His goal throughout this entire thing was that I should work and Krista should go to school, and he goes to treatment, and we leave him alone.
Well, I insisted on going to the first and second ones, Krista insisted on going to the second, and I can see that expression lurking in the back of his eyes that says, leave me alone. So I said, today, I'll work, then I'll go to the last treatment with you. He looked quietly pleased.
Talked to Krista about getting her ride to school. Okay, all arranged. She called the girl who's giving her a ride.
A few minutes later, tears. Daddy is going to be all alone. Oh, dear. Family hug. Loooonnng family hug. I propose that we do whatever Dad wants - after all, he's the one that's sick. He wants to be alone.
Okay. Lots of air is cleared.
Well, I insisted on going to the first and second ones, Krista insisted on going to the second, and I can see that expression lurking in the back of his eyes that says, leave me alone. So I said, today, I'll work, then I'll go to the last treatment with you. He looked quietly pleased.
Talked to Krista about getting her ride to school. Okay, all arranged. She called the girl who's giving her a ride.
A few minutes later, tears. Daddy is going to be all alone. Oh, dear. Family hug. Loooonnng family hug. I propose that we do whatever Dad wants - after all, he's the one that's sick. He wants to be alone.
Okay. Lots of air is cleared.
Side effects starting to kick in
Well, Terry has his 3rd chemo tomorrow. And it's his last week of rads. Starting to be a little tired.
He cancelled working today, to maximize his chances of getting cisplatin tomorrow.
Please.
He cancelled working today, to maximize his chances of getting cisplatin tomorrow.
Please.
Saturday, October 3, 2009
Denise and Fred
One of the unexpected blessings of breast cancer treatment for me was getting involved in the Michigan Survivors thread on breastcancer.org.
I made some really lovely friends, ladies who do the Komen Race for the Cure together every year, and meet for lunch about quarterly. It seems that Terry is the 3rd husband to be diagnosed with cancer since their wife's BC diagnosis - and the longest anyone has been in the group is 5 yrs.
Fred, Denise's husband, was diagnosed with Stage 4 pancreatic cancer in February. Totally stinks. He was treated at the U of as well. The chemo didn't work, and he entered hospice a few weeks ago.
They had hoped for so much more time.
I talked to Neese yesterday. She's praying for my Terry. Breaks my heart.
I made some really lovely friends, ladies who do the Komen Race for the Cure together every year, and meet for lunch about quarterly. It seems that Terry is the 3rd husband to be diagnosed with cancer since their wife's BC diagnosis - and the longest anyone has been in the group is 5 yrs.
Fred, Denise's husband, was diagnosed with Stage 4 pancreatic cancer in February. Totally stinks. He was treated at the U of as well. The chemo didn't work, and he entered hospice a few weeks ago.
They had hoped for so much more time.
I talked to Neese yesterday. She's praying for my Terry. Breaks my heart.
The story of the 1st chemo
This is the day that the theory and discussions became real. Left at like 6 in the morning. Got to U of M Cancer Center on time, despite the fact that the drive was a little scary.
Radiation first. Terry had his simulation and tattoos (we match! - but he got marker to make his stand out) last Wednesday. The first treatment still takes a little longer, as it takes them a few minutes to figure out what to do with you, but he's out pretty quick.
Then we move the car over to the cardiovascular surgery center. About .5 miles of hall - so we drive over to move the car. The Cardiovascular Center is lovely. Kitchen is small, but awesome. Got coffee and hot chocolate. PICC nurse was wonderful - I thanked her for letting me sit in the corner of the room while she put in the line - she said that she fought with co-workers about this sometimes, but that most family members felt much better about what was going on, if they were there, and that we never were a problem. Terry said there was literally no pain, and it was done in like 15 mins. Then he and the nurse marched off to x-ray, to make sure the line is placed correctly. Perfection - they are back, and we are off to the infusion center.
Our itinerary labelled 11:30 - infustion. What desk to go to, etc. We get there, and they are like - you are scheduled for 3:30 - we say, no, Leah told us that we had to get started at 11:30, or else we wouldn't make end-of-day radiation, and that she had told us to come at 11:30. Waved itinerary. Get called back to desk in about 10 minutes - they have no time for us - Leah is off for the day. So sorry. Go away, you can talk to your onc's scheduler if you have problems.
So, off to onc's part of the floor. Scheduler comes out and very condescendingly explains that they have to adhere to the 3:30. that patients can't just change things on a whim, that Leah shouldn't have told us to be there at 11:30 - go away, how about going out for lunch?
I want to see the oncologist, I say. The nurse-practitioner shows up. She explains that there really is no time for this, but that the infusion nurses can get us started, we can go for rads, and then come back and finish the treatment. And she tells us that the infusion charge nurse will be there to give us a pager, for when they are ready for us. No, I say. We have to see the oncologist. Period.
Infusion charge nurse stops by - they are messing up the treatment cycle, I explain - somebody has to resolve this for us. It's my job to be there for my husband - they aren't doing what they said they were going to do. She looks in my eyes and hugs me, and tells me to go on doing what I need to do - that she will support me in this, absolutely.
So, the NP escorts us into a room, where we wait about 45 minutes for dr. bigshot oncologist, who sweeps in and explains to me, in a very condescending tone, that he has a very important meeting in 10 minutes, that DH can have his chemo any time this week, no big deal. And that Leah shouldn't have scheduled us like this. So, I guess, it's all her fault, trying to do what she was told to do?
And I say, My understanding is that the 5-FU infusion pump has to be in place before his next radiation treatment, and that if I'm wrong about this, please explain to me what I misunderstood.
His whole face changed - he says OK - and marches out of the room with NP - after a half hour, I go out into the hall, and grab a nurse and say - somebody better tell me what the hell is going on, because this is a crummy way to treat a patient, and that I am furious. Oh, she says, and comes back in a couple of minutes to say that they are still on the phone with the big shots in the infusion center, getting them to rearrange schedules because my husband has to have his pump in before 6 pm. Period.
Dr oncologist comes in and says everything is ok now. I say - I have a friend who's a doctor, and she told me that only a major cancer center could do the kind of treatment my husband needed to have, and that it was critical that it be done this way, so that was why I insisted on speaking to him. He puffed up, and says, well, you know, we developed most of these treatments - which they did, and which is why we were there. They just really screwed up the implementation. But, there was no discussion about his important meeting.
Infusion charge nurse comes to collect us - she is so angry. She says, I HATE IT WHEN THEY DO THIS. They mess everything up, and now you don't trust any of us, and we deserve it, and that's a rotten thing to do to people who are fighting for their lives.
Terry gets his infusion. They push the saline - 2 liters to protect his kidneys. Premeds and anti-emetics - he's taken steroid pills, so no IV steroids. Then anti-emetics - especially Emend. The big gun. If you do not have good insurance, this costs $300 PER PILL. But, it works. Then cisplatin - Oncologist had explained that platinum-based drugs are really effective against esophageal cancer. One of the people we had consulted with suggested that carboplatin might be better for kidneys - Onc says that Dr Urbe (his partner, the GOD of esophageal cancer), doesn't believe that carboplatin works against esophageal. Ok, we say. No problems. Then taxol. This one is scary - the infusion they deliver the drug in is highly allergenic, and about 20% of patients get really bad reactions. Some even anaphylaxis. But the alternative delivery mechanism, taxotere, is non-allergenic, but it costs twice as much. Comforting, eh?
Now, they rig up the 5FU pump. The U has set up a Home Med division - they have visiting nurses, they are responsible for the pump, the heparin (PICC line must be kept open with daily injections, otherwise the body tries to close the foreign body off from the blood and lymph supply - exactly what we DON'T want. The PICC line is in T's left arm, because, as he explained, he works at Panera, and he doesn't want to get his arm wet. Have some trouble getting all the lines attached, but he says, no pain.
It is now 6:30 - long day. Back to radiation, for final treatment. Check cell phone - there is a message from Krista - Mom - I'm in terrible pain. What should I do. I start phoning her.
No answer on her cell, no answer on house phone. My cell runs out of minutes - I go back and borrow Terry's - what's going on? I ask - Don't know, he says.
Keep calling child. Still no answer. We have been at the radiation center for over an hour and a half. For a 5 minute treatment. Everyone else in the waiting room has gotten their zappees and left. I go through the door - the heck with the little sign that says patients only. I've been patient! They are wheeling a lady on a gurney out - okay, an emergency. I stick my head into various rooms - I finally attract some attention - I explain that our kid left an emergency message, and I can't get her, I'm frantic, and my husband has been here for hours, and where is he?
Getting his treatment - he'll be out in a few minutes. Did NOT ask why they left us so long. Radiation departments move in mysterious ways, and fuck people over at random.
We drive home at 85 MPH. The cop who came across the median pulled the guy NEXT TO US over. Get home - she isn't there. She is at Lily's - there is a phone message. We go over and touch her - tell her it's okay to come home later.
Get home - Terry takes off his shirt while I heat some soup - his PICC line is leaking - his chest is covered in a white crust. Oh, God - call the Home Med emergency number - someone calls back in about 45 mins. She comes out to fix it. She gives me some info about the right way to check a line. Good
Krista gets back with the dog - who messed on the carpet at Lily's house.
It's after 11 PM - I have to be at work by 7 tomorrow. If chemo is like this every time, I will die.
Radiation first. Terry had his simulation and tattoos (we match! - but he got marker to make his stand out) last Wednesday. The first treatment still takes a little longer, as it takes them a few minutes to figure out what to do with you, but he's out pretty quick.
Then we move the car over to the cardiovascular surgery center. About .5 miles of hall - so we drive over to move the car. The Cardiovascular Center is lovely. Kitchen is small, but awesome. Got coffee and hot chocolate. PICC nurse was wonderful - I thanked her for letting me sit in the corner of the room while she put in the line - she said that she fought with co-workers about this sometimes, but that most family members felt much better about what was going on, if they were there, and that we never were a problem. Terry said there was literally no pain, and it was done in like 15 mins. Then he and the nurse marched off to x-ray, to make sure the line is placed correctly. Perfection - they are back, and we are off to the infusion center.
Our itinerary labelled 11:30 - infustion. What desk to go to, etc. We get there, and they are like - you are scheduled for 3:30 - we say, no, Leah told us that we had to get started at 11:30, or else we wouldn't make end-of-day radiation, and that she had told us to come at 11:30. Waved itinerary. Get called back to desk in about 10 minutes - they have no time for us - Leah is off for the day. So sorry. Go away, you can talk to your onc's scheduler if you have problems.
So, off to onc's part of the floor. Scheduler comes out and very condescendingly explains that they have to adhere to the 3:30. that patients can't just change things on a whim, that Leah shouldn't have told us to be there at 11:30 - go away, how about going out for lunch?
I want to see the oncologist, I say. The nurse-practitioner shows up. She explains that there really is no time for this, but that the infusion nurses can get us started, we can go for rads, and then come back and finish the treatment. And she tells us that the infusion charge nurse will be there to give us a pager, for when they are ready for us. No, I say. We have to see the oncologist. Period.
Infusion charge nurse stops by - they are messing up the treatment cycle, I explain - somebody has to resolve this for us. It's my job to be there for my husband - they aren't doing what they said they were going to do. She looks in my eyes and hugs me, and tells me to go on doing what I need to do - that she will support me in this, absolutely.
So, the NP escorts us into a room, where we wait about 45 minutes for dr. bigshot oncologist, who sweeps in and explains to me, in a very condescending tone, that he has a very important meeting in 10 minutes, that DH can have his chemo any time this week, no big deal. And that Leah shouldn't have scheduled us like this. So, I guess, it's all her fault, trying to do what she was told to do?
And I say, My understanding is that the 5-FU infusion pump has to be in place before his next radiation treatment, and that if I'm wrong about this, please explain to me what I misunderstood.
His whole face changed - he says OK - and marches out of the room with NP - after a half hour, I go out into the hall, and grab a nurse and say - somebody better tell me what the hell is going on, because this is a crummy way to treat a patient, and that I am furious. Oh, she says, and comes back in a couple of minutes to say that they are still on the phone with the big shots in the infusion center, getting them to rearrange schedules because my husband has to have his pump in before 6 pm. Period.
Dr oncologist comes in and says everything is ok now. I say - I have a friend who's a doctor, and she told me that only a major cancer center could do the kind of treatment my husband needed to have, and that it was critical that it be done this way, so that was why I insisted on speaking to him. He puffed up, and says, well, you know, we developed most of these treatments - which they did, and which is why we were there. They just really screwed up the implementation. But, there was no discussion about his important meeting.
Infusion charge nurse comes to collect us - she is so angry. She says, I HATE IT WHEN THEY DO THIS. They mess everything up, and now you don't trust any of us, and we deserve it, and that's a rotten thing to do to people who are fighting for their lives.
Terry gets his infusion. They push the saline - 2 liters to protect his kidneys. Premeds and anti-emetics - he's taken steroid pills, so no IV steroids. Then anti-emetics - especially Emend. The big gun. If you do not have good insurance, this costs $300 PER PILL. But, it works. Then cisplatin - Oncologist had explained that platinum-based drugs are really effective against esophageal cancer. One of the people we had consulted with suggested that carboplatin might be better for kidneys - Onc says that Dr Urbe (his partner, the GOD of esophageal cancer), doesn't believe that carboplatin works against esophageal. Ok, we say. No problems. Then taxol. This one is scary - the infusion they deliver the drug in is highly allergenic, and about 20% of patients get really bad reactions. Some even anaphylaxis. But the alternative delivery mechanism, taxotere, is non-allergenic, but it costs twice as much. Comforting, eh?
Now, they rig up the 5FU pump. The U has set up a Home Med division - they have visiting nurses, they are responsible for the pump, the heparin (PICC line must be kept open with daily injections, otherwise the body tries to close the foreign body off from the blood and lymph supply - exactly what we DON'T want. The PICC line is in T's left arm, because, as he explained, he works at Panera, and he doesn't want to get his arm wet. Have some trouble getting all the lines attached, but he says, no pain.
It is now 6:30 - long day. Back to radiation, for final treatment. Check cell phone - there is a message from Krista - Mom - I'm in terrible pain. What should I do. I start phoning her.
No answer on her cell, no answer on house phone. My cell runs out of minutes - I go back and borrow Terry's - what's going on? I ask - Don't know, he says.
Keep calling child. Still no answer. We have been at the radiation center for over an hour and a half. For a 5 minute treatment. Everyone else in the waiting room has gotten their zappees and left. I go through the door - the heck with the little sign that says patients only. I've been patient! They are wheeling a lady on a gurney out - okay, an emergency. I stick my head into various rooms - I finally attract some attention - I explain that our kid left an emergency message, and I can't get her, I'm frantic, and my husband has been here for hours, and where is he?
Getting his treatment - he'll be out in a few minutes. Did NOT ask why they left us so long. Radiation departments move in mysterious ways, and fuck people over at random.
We drive home at 85 MPH. The cop who came across the median pulled the guy NEXT TO US over. Get home - she isn't there. She is at Lily's - there is a phone message. We go over and touch her - tell her it's okay to come home later.
Get home - Terry takes off his shirt while I heat some soup - his PICC line is leaking - his chest is covered in a white crust. Oh, God - call the Home Med emergency number - someone calls back in about 45 mins. She comes out to fix it. She gives me some info about the right way to check a line. Good
Krista gets back with the dog - who messed on the carpet at Lily's house.
It's after 11 PM - I have to be at work by 7 tomorrow. If chemo is like this every time, I will die.
Friday, October 2, 2009
Fingers not broken
But it is swollen as a sausage. The Urgent Care doctor did an x-ray - looks clear - and splinted it.
Got a lecture - the middle finger, specifically the main knuckle joint on the middle finger, controls 40-45% of the range of motion in the hand. So it's really important to ice it, immobilize it, coddle it so that it doesn't get fibrosis.
Lovely. It's really hard to type with a splint on - we won't even talk about how I'm holding a pencil.
Got a lecture - the middle finger, specifically the main knuckle joint on the middle finger, controls 40-45% of the range of motion in the hand. So it's really important to ice it, immobilize it, coddle it so that it doesn't get fibrosis.
Lovely. It's really hard to type with a splint on - we won't even talk about how I'm holding a pencil.
2/3s of the way through radiation
Terry has now completed 10 days of twice a day radiation - 20 treatments. Fry, cancer, fry!
The purpose of rads is to sterilize the tumor exists - the 5FU helps to soften the evil shit up so it can be zapped more effectively.
Terry saw his radiation oncologist today - he keeps asking about symptoms and side effects. He seems to be getting tired more easily, and rests a lot, but that's about it.
When I had radiation, I started getting really tired about half-way through as well.
The purpose of rads is to sterilize the tumor exists - the 5FU helps to soften the evil shit up so it can be zapped more effectively.
Terry saw his radiation oncologist today - he keeps asking about symptoms and side effects. He seems to be getting tired more easily, and rests a lot, but that's about it.
When I had radiation, I started getting really tired about half-way through as well.
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