I make the mistake last night of looking at LDS Hospital's Web site. I know they have an entire section dedicated to the bone marrow transplant (BMT) process. I guess it's time to get out of denial and get more informed.
Probably shouldn't have done that. It doesn't speak in details and is still intense and terrifying. One phrase won't leave me alone. "This period can be very difficult and test even your most effective coping skills." What?! I think I'm strong. I think I've learned lots. I think I cope well with medical things that scare most people. This is going to test even my most effective skills? I DON'T WANT TO! I call my sister, Tress, in tears. What if I can't do this? I'm scared. She's my best friend and one of my greatest supporters, next to Dale; but it's still hard to find any comfort in the world. I don't sleep well that night.
Head to work. Dale is greatly amused as I load everything into the passenger side of the car--including the chemo bag--and then proceed to head to the driver's side. "Trish. That's not going to work" just as I realize my own mistake. I pick up the chemo bag and carry it to the other side of the car. That's twice I've tried to leave it behind. Soon I can.
Leave work at 1, so I have enough time for the last dose of drugs for this round. Pick up Dale on my way through. We arrive about 2 at the clinic.
Join the Circle of Trust again! It's quieter today. The nurse is explaining some things to a new patient. You can't help but hear everything. Weird. Sounds very familiar. I interrupt as I'm getting unhooked from the pump and hooked up for more healing poisons. What do you have? May I ask? "Hodgkins lympoma." is the reponse. Are you kidding me? Suddenly, for being such a rare cancer (less than 1% of all cancers), it's everywhere!
Today goes a lot faster. Still not sure what drugs and in what order they're given. Details to come. After about an hour, we pull out the Cribbage board again. Get a Neulasta shot to stimulate my bone marrow to produce more cells and overcome the chemo more quickly.
Around 4:30, we leave and head home. No more friends to take with us. And no more IVs to start again, as long as I keep the port. I'm so exhausted and so scared. Where's my hope and faith and courage and strength?
Purple Everywhere
Daily Herald picture
Saturday, July 9, 2011
Tuesday, June 28, 2011
Head to AF Hospital--again!--just about 8:30 a.m. This time, we're headed for radiology.
Yes, they're expecting me, but the front desk doesn't know about the bone marrow biopsy or have any orders for it. Good thing I asked. We get that straightened out.
Hurry up and wait again. Okay, I ask to have Dale come back with us and he does.
Oh good. You already have an IV. That's great. We're going to access it and give you some sleepy medication. Really? This again? Can I get this dialogue pre-recorded so that I can just press a button and have it all work out? No sedation. Yes, I'm sure.
Here's the pathologist to do the biopsy. He seems way nervous--especially when he realizes I'll be conscious. Sorry to be so intimidating. It goes fairly smoothly. A sharp stab, some warm stinging in my right hip. I'm good. "I'm making a small incision now" as a small trail of warm fluid runs down my body. Yep. Got that.
"Trish, I'm sitting on your bone, about to drill through." Yep. I can feel it. Bone's never get completely numb. Go for it. This part isn't that fun, but it's not that difficult either. Nurse asks how I'm doing, then laughs out loud, "She says she's fine as she quints her eyes close." But I don't yell or move or do anything else, so she takes me at my word.
Then they ask Dale how he's doing. Can't have him passing out in the corner. Are you kidding? He's a former funeral director, I inform them. If embalming bodies didn't bother him, do you really think a little biopsy will?
Okay, large jolt--almost like a strong electric current--runs down my leg. Almost finished and we need only two samples and no aspirations. Great. Done. Some pressure. A band aid. We're done with the first part of the day.
Move to an adjoining room with a large X-ray or CT machine. Transfer to the gurney. How are we ever going to access the top right side of my chest? I volunteer, "Last time they had to use duct tape to secure my chest down. When they removed the port, they kept me partially sitting up. Whatever works for you." Time for more duct tape. They apologize over and over again for having to use so much tape.
Are you sure you don't want any sedation? Yes, I'm positive. Thanks, for asking. Well, we are accessing your IV to give you an antibiotic. Great.
Lots of draping, even over my head, but they cut away a large hole so I don't feel quite so claustrophobic. Radiologist asks for calm music. Phantom of the Opera springs up, followed by Jessica's Theme from Man From Snowy River. Ahhh, perfect.
Brief stab and more lidocaine warming. I have the perfect captive audience, but I forget to ask them why there are two incisions required. One probably hooks to a vein, but I might never find out if I don't remember to ask. Exact same port--a purple, triangular PowerPort--as before.
Decides not to go with his originally intended placement, next to my old one. This one will go out a little from the last one, which should provide better access. Plus, the veins were twisted on the last port, which probably provided some positioning problems. I'm amazed that he can tell all of this from live scans he's taking throughout.
Some pushing and tugging as they clear a pocket for the port to go in. Then, more waiting.
The radiologist isn't intimidated that I'm not asleep and there's some bantering back and forth. I learn about his weekend plans with his family and listen to other fun chitchat.
How many ports do you place a week? "Used to be 3-4, but now it's not that common." What changed? "Well, surgeons realized they could place them so they steal all of the cases they can. However, if there's any kind of risk, like a suspicious history or second port placement, they send them to us radiologists, which is how you ended up here." Interesting.
After about thirty minutes, there's a phone call in the room. Matt, a technician, answers. "Hey, have we ever given sedation for a xxx shot? No? I didn't think so. Maybe we can talk her out of it when it's time." Wait, I harass him, let me get this straight. For the patients who don't want any sedation, you try to talk them into it. For the patients that do want sedation, you try to talk them out of it. I see how you are. Whatever the patient wants, you're not into. It's kind of funny. "No, you're just strange, Trish. Most people beg to be put out for a 45-minute procedure. She's having a 5-minute injection and wants to sleep through it."
Time to access the port, but it's being very stubborn. I count three, four, five attempts. Finally! What was the difficulty, I ask a bit later as I'm being undraped, untaped, and unhooked? Does that mean we're going to have positional problems with this port too? It's just all the swelling and irration from a newly placed port. Oh good. They leave the port accessed so I can go next door and receive more chemo.
I'm dressed and ready to leave less than five minutes later. Oh wait. I've been fasting so that everyone else would be comfortable, and now I'm facing about four hours of chemo? We've got to get something to eat first.
Head downstairs to the cafeteria. It's opening in five minutes for lunch. I'm a little dizzy and tired, so I sit in a chair up a nearby hallway. I'm ravenous as soon as I smell food. My ham and baked potato is almost finished before Dale's hamburger is off the grill and before we've paid for anything. Oh well. I still have grapefruit juice to go.
After we sit down, Matt from Radiology comes in. Hey. Did you talk your next patient out of the sedation? "Actually, I guess we kind of did because she ended up not having the injection."
Finally, we're ready for the third part of the day--more chemo--and head next doors.
Back into the Circle of Trust. There's already two other patients there. It's pretty common to have at least two or three people getting chemo together. I'm not sure what the drug regimen is today. I'll have to find out and detail it later. It's considered the long day of the three. Between three and a half hours and four hours passes with more poisons dripping into my body. This time Dale and I are prepared, and we spend the time playing multiple rounds of Cribbage. Dr. Wendy comes in to watch us play for a while.
Finished! But not quite complete. Now, I'm hooked up to a pump that disappears into a black bag with my name written on tape on the inside of it. Lovely! I'm so excited to take another friend home tonight, and two days in a row also. One of the chemo drugs is so irritating that they diffuse it as much as they can over a 24-hour period to alleviate its caustic side effects. The bag is almost bursting but will gradually shrink. It's not too heavy, but it's going to take some getting used to--especially when it beeps and clicks every two minutes or so to load the next increment of medicine. "Bury it under a pillow at night," the nurse advises.
Finally! I get to leave the hospital and cancer clinic at around 4:30 that day. I'm exhausted!
Yes, they're expecting me, but the front desk doesn't know about the bone marrow biopsy or have any orders for it. Good thing I asked. We get that straightened out.
Hurry up and wait again. Okay, I ask to have Dale come back with us and he does.
Oh good. You already have an IV. That's great. We're going to access it and give you some sleepy medication. Really? This again? Can I get this dialogue pre-recorded so that I can just press a button and have it all work out? No sedation. Yes, I'm sure.
Here's the pathologist to do the biopsy. He seems way nervous--especially when he realizes I'll be conscious. Sorry to be so intimidating. It goes fairly smoothly. A sharp stab, some warm stinging in my right hip. I'm good. "I'm making a small incision now" as a small trail of warm fluid runs down my body. Yep. Got that.
"Trish, I'm sitting on your bone, about to drill through." Yep. I can feel it. Bone's never get completely numb. Go for it. This part isn't that fun, but it's not that difficult either. Nurse asks how I'm doing, then laughs out loud, "She says she's fine as she quints her eyes close." But I don't yell or move or do anything else, so she takes me at my word.
Then they ask Dale how he's doing. Can't have him passing out in the corner. Are you kidding? He's a former funeral director, I inform them. If embalming bodies didn't bother him, do you really think a little biopsy will?
Okay, large jolt--almost like a strong electric current--runs down my leg. Almost finished and we need only two samples and no aspirations. Great. Done. Some pressure. A band aid. We're done with the first part of the day.
Move to an adjoining room with a large X-ray or CT machine. Transfer to the gurney. How are we ever going to access the top right side of my chest? I volunteer, "Last time they had to use duct tape to secure my chest down. When they removed the port, they kept me partially sitting up. Whatever works for you." Time for more duct tape. They apologize over and over again for having to use so much tape.
Are you sure you don't want any sedation? Yes, I'm positive. Thanks, for asking. Well, we are accessing your IV to give you an antibiotic. Great.
Lots of draping, even over my head, but they cut away a large hole so I don't feel quite so claustrophobic. Radiologist asks for calm music. Phantom of the Opera springs up, followed by Jessica's Theme from Man From Snowy River. Ahhh, perfect.
Brief stab and more lidocaine warming. I have the perfect captive audience, but I forget to ask them why there are two incisions required. One probably hooks to a vein, but I might never find out if I don't remember to ask. Exact same port--a purple, triangular PowerPort--as before.
Decides not to go with his originally intended placement, next to my old one. This one will go out a little from the last one, which should provide better access. Plus, the veins were twisted on the last port, which probably provided some positioning problems. I'm amazed that he can tell all of this from live scans he's taking throughout.
Some pushing and tugging as they clear a pocket for the port to go in. Then, more waiting.
The radiologist isn't intimidated that I'm not asleep and there's some bantering back and forth. I learn about his weekend plans with his family and listen to other fun chitchat.
How many ports do you place a week? "Used to be 3-4, but now it's not that common." What changed? "Well, surgeons realized they could place them so they steal all of the cases they can. However, if there's any kind of risk, like a suspicious history or second port placement, they send them to us radiologists, which is how you ended up here." Interesting.
After about thirty minutes, there's a phone call in the room. Matt, a technician, answers. "Hey, have we ever given sedation for a xxx shot? No? I didn't think so. Maybe we can talk her out of it when it's time." Wait, I harass him, let me get this straight. For the patients who don't want any sedation, you try to talk them into it. For the patients that do want sedation, you try to talk them out of it. I see how you are. Whatever the patient wants, you're not into. It's kind of funny. "No, you're just strange, Trish. Most people beg to be put out for a 45-minute procedure. She's having a 5-minute injection and wants to sleep through it."
Time to access the port, but it's being very stubborn. I count three, four, five attempts. Finally! What was the difficulty, I ask a bit later as I'm being undraped, untaped, and unhooked? Does that mean we're going to have positional problems with this port too? It's just all the swelling and irration from a newly placed port. Oh good. They leave the port accessed so I can go next door and receive more chemo.
I'm dressed and ready to leave less than five minutes later. Oh wait. I've been fasting so that everyone else would be comfortable, and now I'm facing about four hours of chemo? We've got to get something to eat first.
Head downstairs to the cafeteria. It's opening in five minutes for lunch. I'm a little dizzy and tired, so I sit in a chair up a nearby hallway. I'm ravenous as soon as I smell food. My ham and baked potato is almost finished before Dale's hamburger is off the grill and before we've paid for anything. Oh well. I still have grapefruit juice to go.
After we sit down, Matt from Radiology comes in. Hey. Did you talk your next patient out of the sedation? "Actually, I guess we kind of did because she ended up not having the injection."
Finally, we're ready for the third part of the day--more chemo--and head next doors.
Back into the Circle of Trust. There's already two other patients there. It's pretty common to have at least two or three people getting chemo together. I'm not sure what the drug regimen is today. I'll have to find out and detail it later. It's considered the long day of the three. Between three and a half hours and four hours passes with more poisons dripping into my body. This time Dale and I are prepared, and we spend the time playing multiple rounds of Cribbage. Dr. Wendy comes in to watch us play for a while.
Finished! But not quite complete. Now, I'm hooked up to a pump that disappears into a black bag with my name written on tape on the inside of it. Lovely! I'm so excited to take another friend home tonight, and two days in a row also. One of the chemo drugs is so irritating that they diffuse it as much as they can over a 24-hour period to alleviate its caustic side effects. The bag is almost bursting but will gradually shrink. It's not too heavy, but it's going to take some getting used to--especially when it beeps and clicks every two minutes or so to load the next increment of medicine. "Bury it under a pillow at night," the nurse advises.
Finally! I get to leave the hospital and cancer clinic at around 4:30 that day. I'm exhausted!
Thursday, July 7, 2011
Monday, June 27, 2011
I drive to work, to be prepared for whatever the day will bring. And boy, does it bring!
It's 9:30 and I get a call from Dr. Wendy's office. Can I be meet her about 1? Sure.
Regular meeting with my development team. They should know why my schedule's going to change, but how do I start this conversation? "I want you to hear this directly from me and not through any other pipeline. I have cancer. I'll probably be starting chemo this week. I'll keep you informed as to when I'll be in the office, when I might be working from home, and when I'll be off." Goes better than anticipated.
At the appropriate time, I leave work, swing home to pick up Dale, and head 1.5 miles down the road. What's going to happen now?
Meet with Dr. Wendy. All results are in. No real surprises. What is surprising is that this isn't considered Stage I. Instead, it's considered a recurrence of the Stage III-B that I had two and a half years ago. And she's talked to the transplant team at LDS Hospital already. They're recommending a bone marrow transplant.
"No" I scream loudly in her office. And what support does she offer for my almost subconscious and very loud protest? Looking directly at Dale, she flips the report papers she's holding in her hand, pens "YES" in red block letters, and turns the paper towards me. Whatever!
So now what? Recommending two rounds of ICE chemo this time, mostly to get my body ready for the transplant. What's ICE? That's a new acronym to me. So far, I've had MOPP with radiation, and ADV, without the B. Now ICE?
Ifosfamide or Ifex (with Mensa to protect my bladder), Carboplatin, and Etoposide. It's given over a three-day period, every three weeks. Wow! We're really doing this. When? I don't have a port yet.
Right now, of course. Today! I should have known. I'd love to have one day to process all of the information, then come back tomorrow to start; but that's not how we do things here. In fact, here's the nurse to start an IV--again! 5 times in 13 days. At least, the ratio is getting smaller now.
Shouldn't we go back to the MOPP because it cured me for thirty years--even when my parents didn't finish the treatments or do any of the recommended follow up? There's a limit to how much of some chemo drugs our bodies can get over its lifetime. While we haven't exceeded those limits yet, MOPP has the worst side effects. We'll save it in case we ever need a last resort.
Some preliminary information and consent forms to sign. This isn't even half of the information they overwhelmed me with last time. Is that because this is easier or because I'm supposed to remember it all from before?
Move out of the exam room to join the rest of patients in the back, Circle of Trust room. It's a large open room with six recliners of varying degrees of comfort positioned into almost a full circle. A handy IV pole sits next to each chair and a trash can. And the nurses' desk tucked into one corner.
I call it the Circle of Trust room because you hear everything that everyone says in that room: patients, nurses, visitors--it makes no difference. Once you're in that circle, you'd better be trustworthy.
Look! I forgot how beautiful those stained glass stars of various sizes and in blues and frosted and clear glass are. A sign of some hope in the world. But we didn't bring the cribbage board today. That's how Dale and I passed a lot of time waiting for former ADV treatments to drip in.
We start backwards, with the Etoposide first. It takes about 2-2.5 hours to infuse. It's so weird to think of poison being dripped into my veins and heart and body. Okay. Don't spend too much time on that thought, Trish, or you'll rip the needle out and go running and screaming from the building.
The nurses are so nice though because they leave the IV in to save time and having to start another IV in the morning, when I'm scheduled for the port placement and bone marrow biopsy. As soon as I've finished with those two things at the hospital, I get to come over for the next part of ICE.
Lovely! I can hardly wait, and I get to take a friend (the IV) home with me? This just gets better and better because everyone should have medical things follow them home and not be able to pretend they don't exist for just a few hours!
It's 9:30 and I get a call from Dr. Wendy's office. Can I be meet her about 1? Sure.
Regular meeting with my development team. They should know why my schedule's going to change, but how do I start this conversation? "I want you to hear this directly from me and not through any other pipeline. I have cancer. I'll probably be starting chemo this week. I'll keep you informed as to when I'll be in the office, when I might be working from home, and when I'll be off." Goes better than anticipated.
At the appropriate time, I leave work, swing home to pick up Dale, and head 1.5 miles down the road. What's going to happen now?
Meet with Dr. Wendy. All results are in. No real surprises. What is surprising is that this isn't considered Stage I. Instead, it's considered a recurrence of the Stage III-B that I had two and a half years ago. And she's talked to the transplant team at LDS Hospital already. They're recommending a bone marrow transplant.
"No" I scream loudly in her office. And what support does she offer for my almost subconscious and very loud protest? Looking directly at Dale, she flips the report papers she's holding in her hand, pens "YES" in red block letters, and turns the paper towards me. Whatever!
So now what? Recommending two rounds of ICE chemo this time, mostly to get my body ready for the transplant. What's ICE? That's a new acronym to me. So far, I've had MOPP with radiation, and ADV, without the B. Now ICE?
Ifosfamide or Ifex (with Mensa to protect my bladder), Carboplatin, and Etoposide. It's given over a three-day period, every three weeks. Wow! We're really doing this. When? I don't have a port yet.
Right now, of course. Today! I should have known. I'd love to have one day to process all of the information, then come back tomorrow to start; but that's not how we do things here. In fact, here's the nurse to start an IV--again! 5 times in 13 days. At least, the ratio is getting smaller now.
Shouldn't we go back to the MOPP because it cured me for thirty years--even when my parents didn't finish the treatments or do any of the recommended follow up? There's a limit to how much of some chemo drugs our bodies can get over its lifetime. While we haven't exceeded those limits yet, MOPP has the worst side effects. We'll save it in case we ever need a last resort.
Some preliminary information and consent forms to sign. This isn't even half of the information they overwhelmed me with last time. Is that because this is easier or because I'm supposed to remember it all from before?
Move out of the exam room to join the rest of patients in the back, Circle of Trust room. It's a large open room with six recliners of varying degrees of comfort positioned into almost a full circle. A handy IV pole sits next to each chair and a trash can. And the nurses' desk tucked into one corner.
I call it the Circle of Trust room because you hear everything that everyone says in that room: patients, nurses, visitors--it makes no difference. Once you're in that circle, you'd better be trustworthy.
Look! I forgot how beautiful those stained glass stars of various sizes and in blues and frosted and clear glass are. A sign of some hope in the world. But we didn't bring the cribbage board today. That's how Dale and I passed a lot of time waiting for former ADV treatments to drip in.
We start backwards, with the Etoposide first. It takes about 2-2.5 hours to infuse. It's so weird to think of poison being dripped into my veins and heart and body. Okay. Don't spend too much time on that thought, Trish, or you'll rip the needle out and go running and screaming from the building.
The nurses are so nice though because they leave the IV in to save time and having to start another IV in the morning, when I'm scheduled for the port placement and bone marrow biopsy. As soon as I've finished with those two things at the hospital, I get to come over for the next part of ICE.
Lovely! I can hardly wait, and I get to take a friend (the IV) home with me? This just gets better and better because everyone should have medical things follow them home and not be able to pretend they don't exist for just a few hours!
Wednesday, July 6, 2011
Saturday, June 25, 2011
I love Cedar Hills Parade Day. It's so amazingly cool to be able to walk to the end of our cul-de-sac, carting chairs or a few sleeping bags, cross the road, and have the perfect shaded viewing spot of the entire parade as it passes by.
Come on family. We have to go. Let's not even bother with chairs this year. We'll just use a sleeping bags.
Dale and I leave before anyone else is ready, but I'd like to get situated a little early. I have two dear friends in the neighborhood that I want to seek out. They are dear friends because we taught together in Primary years ago. You learn a lot about people and love them when you serve that closely with them. They deserve to hear the news directly from me.
I find Amy at the bake sale to raise funds for Jessie's cancer treatments. Amazing! Got a minute? Can we talk semi-privately? "Am I in trouble? Have I done something?" she wants to know. Hah! As if. Sorry. If only it were that easy.
Now to track down Sandi. She's still at home and doesn't realize the parade is about to start. Come on. We've got extra room for you. And even an extra sleeping bag, since Olsen's are kind enough to share their chairs with us.
The parade is great fun as candy is thrown wildy and often and small children dodge the next entry to retrieve it all. Our children now feel they're too old to bother with some of the wrapped treats and are content to leave them sit in front of them to be gathered by others or smashed into the pavement. Retrieve the peppermint hard candies and taffies, please. I anticpate them helping a nauseated stomach.
We yell support and cheer whenever we see people we know. There's our dentist; neighborhood funeral director; friends in band, cheerleading, dance troupes, and karate classes; and even an entry from the Intermountain Cancer Center. Priceless! Randy walks with that group. When he sees me, he walks over, grabs my face with two hands, and plants a kiss on my forehead. Dale, did you just see that? I just got kissed from a guy in the parade. I'm a little stunned, but know he just learned of our next battle also and appreciate the small token of support.
Come on family. We have to go. Let's not even bother with chairs this year. We'll just use a sleeping bags.
Dale and I leave before anyone else is ready, but I'd like to get situated a little early. I have two dear friends in the neighborhood that I want to seek out. They are dear friends because we taught together in Primary years ago. You learn a lot about people and love them when you serve that closely with them. They deserve to hear the news directly from me.
I find Amy at the bake sale to raise funds for Jessie's cancer treatments. Amazing! Got a minute? Can we talk semi-privately? "Am I in trouble? Have I done something?" she wants to know. Hah! As if. Sorry. If only it were that easy.
Now to track down Sandi. She's still at home and doesn't realize the parade is about to start. Come on. We've got extra room for you. And even an extra sleeping bag, since Olsen's are kind enough to share their chairs with us.
The parade is great fun as candy is thrown wildy and often and small children dodge the next entry to retrieve it all. Our children now feel they're too old to bother with some of the wrapped treats and are content to leave them sit in front of them to be gathered by others or smashed into the pavement. Retrieve the peppermint hard candies and taffies, please. I anticpate them helping a nauseated stomach.
We yell support and cheer whenever we see people we know. There's our dentist; neighborhood funeral director; friends in band, cheerleading, dance troupes, and karate classes; and even an entry from the Intermountain Cancer Center. Priceless! Randy walks with that group. When he sees me, he walks over, grabs my face with two hands, and plants a kiss on my forehead. Dale, did you just see that? I just got kissed from a guy in the parade. I'm a little stunned, but know he just learned of our next battle also and appreciate the small token of support.
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