June 2017
We had a fantastic five days in Florida, but let me tell you what, 96 degree weather and MS are NOT good bedfellows. I was kind of okay during the day, but the nights were the worst. I was driven from bed and into the bathroom more than once. Throwing up is always fun.
Not.
Thank goodness for zofran. I think I would've died without it. Now that I'm back home, things are starting to settle down and level out. Holding off on the food I really wanted to eat and having salads instead helped a ton. It didn't weigh me down or make me super hot.
My husband put water in me like crazy, but it still wasn't enough to kill the harsh effects of the heat.
I didn't realize how bad it could get.
We're heading out on our trip very soon, and I'm hoping to be able to focus better than I have been. I feel woozy most of the day, but the dizziness has backed off some.
We did have a good time though, and we didn't really say the C word but once or twice. It was like a nun breathing over your shoulder while you're taking a test at Catholic school. Always there, but rarely acknowledged.
Our insurance company is pretty dang amazing though. They've been in touch a couple of times to see how/if they can help in any way as my husband goes through this. Back when my MS was diagnosed, they also assigned me a personal caseworker. She calls and asks me how I'm doing at least once every couple of months. Copaxone also does this. For a while, it was every month, but now that I have things kind of under control, it's backed off a bit.
I did set up a caring bridge site. If you're not familiar, it's a pretty awesome little place where you can post updates for people who want to stay in the know without having to send a billion texts or make a billion phone calls (or post everything on social media for the world to read).
If you haven't, and you're going through something personal health-wise, you may want to consider it. It's free. Go here.
I'll let you all know what I think of the doctors in Indiana once we get there. Fingers crossed they're as amazing as they seem thus far.
Until next time!
Showing posts with label ports for chemo. Show all posts
Showing posts with label ports for chemo. Show all posts
Thursday, June 1, 2017
Thursday, May 25, 2017
Time for a Vacation
May 2017
Well, the PET scan was done. No change in the tumor at all.
Our worst fears had been realized.
We start doing research on the best RPLND surgeons in the country, and we hit upon two doctors: Dr. Einhorn and Dr. Carey at the University of Indiana.
Arrangements have been made to travel there and have the surgery done. We're finished taking risks. Dr. Einhorn is the leading testicular cancer doctor in the US, and Dr. Carey does RPLND surgery. All records have been sent to them, and surgery is scheduled for June 8th, with a consult the afternoon of June 7th with both doctors.
Yes, it's going to cost money. No, we're not concerned about that. What matters at this point is my husband surviving. Period.
He has to live. There isn't another option.
It's bad enough that this disease causes people to have PTSD where their health is concerned. Every twinge, every ache, and he's going to think the cancer is back for the rest of his damned life. Even four years, ten years, or fifteen years from now, he'll worry.
So, from now until Tuesday, the C word won't be spoken. We're going to lay on a beach and pretend everything is okay for five days. When we come back, we'll prepare ourselves for the worst and hope for the best.
My annual MRI was done Monday, so we'll deal with whatever comes from that when we return home, too.
I'll be updating this blog as we move forward now.
If anyone wants step-by-step recipes, drop a comment down below, and I'll get in here and post some.
Remember to do those self exams, fellas!
Until next time.
Well, the PET scan was done. No change in the tumor at all.
Our worst fears had been realized.
We start doing research on the best RPLND surgeons in the country, and we hit upon two doctors: Dr. Einhorn and Dr. Carey at the University of Indiana.
Arrangements have been made to travel there and have the surgery done. We're finished taking risks. Dr. Einhorn is the leading testicular cancer doctor in the US, and Dr. Carey does RPLND surgery. All records have been sent to them, and surgery is scheduled for June 8th, with a consult the afternoon of June 7th with both doctors.
Yes, it's going to cost money. No, we're not concerned about that. What matters at this point is my husband surviving. Period.
He has to live. There isn't another option.
It's bad enough that this disease causes people to have PTSD where their health is concerned. Every twinge, every ache, and he's going to think the cancer is back for the rest of his damned life. Even four years, ten years, or fifteen years from now, he'll worry.
So, from now until Tuesday, the C word won't be spoken. We're going to lay on a beach and pretend everything is okay for five days. When we come back, we'll prepare ourselves for the worst and hope for the best.
My annual MRI was done Monday, so we'll deal with whatever comes from that when we return home, too.
I'll be updating this blog as we move forward now.
If anyone wants step-by-step recipes, drop a comment down below, and I'll get in here and post some.
Remember to do those self exams, fellas!
Until next time.
Wednesday, May 24, 2017
BEP Chemo Round 3
April 2017
On the third, we again prepare for a week in the infusion center. Hubs isn't feeling any better. Not that we thought it would be perfect, but he was totally prepared to be back to the place he was after the first round. We weren't sure if it was because of the complications along the way or if that was totally normal.
But our morning rituals of a bread item (he really liked french toast bagels with some kind of jam or jelly on them) was keeping his stomach in check. He still felt sick, but managed to not throw up through this whole process except the day he was admitted to the hospital (and that was caused by the meds given to stop the shaking).
Monday through Thursday went well. No adverse reaction to the bleo. Yay! I had a work event that was out of town on Saturday, so I left early Friday morning to drive there. His father and sister came to stay with him. I called about a gabillion times to check on him, make sure everything went smoothly, and ask how he was feeling. It was nerve-wracking to be away from him after everything that had gone wrong by that point. He spent the weekend in bed, not feeling well at all. Fatigue, loss of appetite, and shortness of breath were the biggest issues at that point.
The PICC line was removed at the infusion center Friday afternoon.
Everything seemed to be going as well as could be expected until late Tuesday evening. He shows me his arm where the PICC line was. That vein was super dark and there was a knot on his inner arm. Since there was an appointment set with the doctor for Thursday, we decided to wait and say something then.
Turns out, the one complication that can come with a PICC line is a blood clot. After an ultrasound of the entire vein, it's decided he has DVT (deep-vein thrombosis). Doc puts hubs on a blood thinner. Round two of the bleo for that cycle was infused that afternoon, he asked for hydration in addition because he was having a hard time drinking anything, and we headed home.
Blood. That's what happened that next weekend. In the toilet, where it's not supposed to be. We discuss and decide it'll be okay to wait until Thursday when we have the appointment with the doc. Why? Because half a teaspoon of blood looks like a lot more when it hits the water, and he wasn't bleeding when he wasn't using the bathroom.
Doc didn't think there was anything to be worried about, said that it was probably a fissure due to a hemorrhoid, but he did tell hubs to go ahead and stop the blood thinners. When we got the results from the blood test that morning, it showed his white count down to four. This will matter in a moment...
Round three bleo was infused April 20th, along with some more hydration, and we headed home where he proceeded to collapse into bed.
Now, I know I make it seem like I was all good that whole time, but I was stressed beyond belief. One of the drawbacks of the way my MS affects me is that when my blood pressure goes up, my brain starts acting stupid. I battled nausea daily during this process, and my joints were screaming from sitting all day. There was a lot of pain to deal with. I was popping Aleve twice a day like tic-tacs, and that was causing other issues. My body struggles with medications. I'd been holding back my tears because I had hope that the chemo would be it, and I'd be able to breathe again soon. Crying also makes me very, very ill.
That was the last treatment in the cycle. We were hopeful. So very hopeful.
Thursday evening, a fever set in. There were no tremors or shaking, but no matter what I did, I couldn't get his temperature to go back down.
We pile in the car and head to the ER after a terse conversation with the doctor.
They admitted him, put a triple central line in his neck, and kept him five days. His white count was at zero, and it took the full five days for it to come back up to a level they were comfortable releasing him with.
I couldn't stay. There was nowhere for me to sleep. Luckily, that hospital was only about twenty minutes from the house. It was over an hour to the one he was admitted to the first time. So, I spent my days there and my nights at home.
We were tense by the time they released him. He just wanted to go home, and I was worried there was something they weren't telling us. Things were nearing a breaking point by the time the doctor came in and signed the papers. Turned out it was probably the fissure causing the fever. Awesome. Not.
PET scans and CTs follow. I'll start on May tomorrow and go into what happened.
Until then!
On the third, we again prepare for a week in the infusion center. Hubs isn't feeling any better. Not that we thought it would be perfect, but he was totally prepared to be back to the place he was after the first round. We weren't sure if it was because of the complications along the way or if that was totally normal.
But our morning rituals of a bread item (he really liked french toast bagels with some kind of jam or jelly on them) was keeping his stomach in check. He still felt sick, but managed to not throw up through this whole process except the day he was admitted to the hospital (and that was caused by the meds given to stop the shaking).
Monday through Thursday went well. No adverse reaction to the bleo. Yay! I had a work event that was out of town on Saturday, so I left early Friday morning to drive there. His father and sister came to stay with him. I called about a gabillion times to check on him, make sure everything went smoothly, and ask how he was feeling. It was nerve-wracking to be away from him after everything that had gone wrong by that point. He spent the weekend in bed, not feeling well at all. Fatigue, loss of appetite, and shortness of breath were the biggest issues at that point.
The PICC line was removed at the infusion center Friday afternoon.
Everything seemed to be going as well as could be expected until late Tuesday evening. He shows me his arm where the PICC line was. That vein was super dark and there was a knot on his inner arm. Since there was an appointment set with the doctor for Thursday, we decided to wait and say something then.
Turns out, the one complication that can come with a PICC line is a blood clot. After an ultrasound of the entire vein, it's decided he has DVT (deep-vein thrombosis). Doc puts hubs on a blood thinner. Round two of the bleo for that cycle was infused that afternoon, he asked for hydration in addition because he was having a hard time drinking anything, and we headed home.
Blood. That's what happened that next weekend. In the toilet, where it's not supposed to be. We discuss and decide it'll be okay to wait until Thursday when we have the appointment with the doc. Why? Because half a teaspoon of blood looks like a lot more when it hits the water, and he wasn't bleeding when he wasn't using the bathroom.
Doc didn't think there was anything to be worried about, said that it was probably a fissure due to a hemorrhoid, but he did tell hubs to go ahead and stop the blood thinners. When we got the results from the blood test that morning, it showed his white count down to four. This will matter in a moment...
Round three bleo was infused April 20th, along with some more hydration, and we headed home where he proceeded to collapse into bed.
Now, I know I make it seem like I was all good that whole time, but I was stressed beyond belief. One of the drawbacks of the way my MS affects me is that when my blood pressure goes up, my brain starts acting stupid. I battled nausea daily during this process, and my joints were screaming from sitting all day. There was a lot of pain to deal with. I was popping Aleve twice a day like tic-tacs, and that was causing other issues. My body struggles with medications. I'd been holding back my tears because I had hope that the chemo would be it, and I'd be able to breathe again soon. Crying also makes me very, very ill.
That was the last treatment in the cycle. We were hopeful. So very hopeful.
Thursday evening, a fever set in. There were no tremors or shaking, but no matter what I did, I couldn't get his temperature to go back down.
We pile in the car and head to the ER after a terse conversation with the doctor.
They admitted him, put a triple central line in his neck, and kept him five days. His white count was at zero, and it took the full five days for it to come back up to a level they were comfortable releasing him with.
I couldn't stay. There was nowhere for me to sleep. Luckily, that hospital was only about twenty minutes from the house. It was over an hour to the one he was admitted to the first time. So, I spent my days there and my nights at home.
We were tense by the time they released him. He just wanted to go home, and I was worried there was something they weren't telling us. Things were nearing a breaking point by the time the doctor came in and signed the papers. Turned out it was probably the fissure causing the fever. Awesome. Not.
PET scans and CTs follow. I'll start on May tomorrow and go into what happened.
Until then!
Tuesday, May 23, 2017
BEP Chemo Round 2
I tried to do this yesterday, but my MS is making my ears ring, and it's giving me headaches. But here I am! Onward!
March 2017
A third round of bleomycin was given on the seventh, but it wasn't hitting my husband as hard as he thought it would. He was on an upswing, and he was even back to eating some food with (very, very light) black pepper.
When he started round two, he was a little brighter and a little more positive.
On the thirteenth, we again hit the infusion center ready for the week. We'd learned what he'd want and not want as the week progressed, and we were well prepared. He worked, and I took the week off while I sat with him, focusing on his needs, and taking care of him in general. Neither of us knew what to expect, but we'd heard round two was worse than round one, so we were being cautious.
Monday through Wednesday went pretty well, but he was wiped out at the end of each day. By Thursday, he wasn't hungry anymore, and his port was really sore. Still no showers because they were leaving the port site accessed so they wouldn't have to stick him every day. You can't shower while your port is open like that. Friday, they took the needle out and he had the first shower he'd dared in over four weeks.
Saturday, he woke up complaining that the port was sore and so was his neck. I looked at it and noticed it was red, but figured it was because it had been used all week. By the way, it was still very bruised. Remember, this is four weeks from the implant date. *worry*
By Monday, it was red enough that I called the doctor's emergency number. Try to keep up here, because this begins a whirlwind of crazy.
We headed down to the office the doc was in that day and he had a nurse take cultures from the port. They infused a ton of hydration that day and got my husband an appointment with an infectious disease doctor.
Tuesday, the bleomycin was given via vein (this is the only part of the chemo treatment they can do without a central line) because the port was so red and angry looking.
Wednesday, we headed to the infectious disease guy at 9am. Cultures came back positive for several strands of staph. Dalbavancin was infused via an IV and Bactrim was prescribed. We were told the port needed to come out that day, and an appointment was made at the same place my husband had it put in for that afternoon. While we're sitting in the infusion center, our daughter's school calls and tells us she's fallen and messed up her face and knees.
Once the infusion is done, we head to the school, grab the kiddo, and go to the hospital for port removal. To give you an idea of how badly her face was jacked up, people in the hospital kept stopping and asking her if she was okay. Yeah...
So, we get the port out, and we manage to get home before 6pm. Of course, we had to pick up a prescription for pain, so I was also able to tend the girl child's face while at the pharmacy. Again, we're told he can't have a shower for seven days.
Next morning (Thursday), her face scab is super yellow. I take her to the doctor. Infected. Joy.
My husband is feeling fluish, but he had a flu shot before chemo started, so we're not worried beyond the aches in his muscles. After research, we discover this can be a side-effect of staph. Awesome. Not.
He laid in the bed all weekend and could barely walk to the mailbox without getting winded by that point.
On Monday, the order came down that the Bactrim dose needed to be doubled (just to be safe). So, rather than once a day, he began taking it twice a day.
Tuesday arrived, and we headed to the infusion center for the Bleomycin infusion. His temp was up to 99.2, but they decided to go ahead with treatment. All seemed to be going well, and he had the IV removed and got up to go to the bathroom. When he came back, he was shaking all over, and the shizz hit the fan.
Full rigors and a temperature that spiked to 104. By some miracle, one of the nurses managed to get a new IV in, and the medications started. They flooded him with fluids, hit him with demeral and phenergan, and called emergency transport. I got in the car and followed them to the hospital, freaking out.
He stayed there through Friday with a white count that was nearly zero, and they hit him with broad-spectrum antibiotics. I stayed with him and just did my Copaxone shots in the visitor's bathroom.
Before releasing him, they inserted a PICC line so chemo could continue the following Monday (we were back to the five day treatments they needed the central line for). No showers as long as the PICC was in.
He was sooooo happy. *sarcasm* Not only that, but he was a little bit traumatized from the whole experience.
Saturday morning, he woke up okay, but then after taking his meds for the day, started to shake and get a fever. After much research, we discover that everything he'd been experiencing since the staph had been found was related to a sulfa allergy. I call the doc, explain myself, and pump hubs full of motrin, tylenol, and benadryl.
He was better by that evening and continued to improve as the weekend went on. Now, because the doc was nervous about it being the bleo infusions, those were moved to Thursdays so he'd be in the office should anything go awry.
That was the last three weeks of March. We thought we were over the worst of it. Again, we couldn't have been more wrong.
April begins a whole new set of issues.
I'll get into that tomorrow.
Until then.
March 2017
A third round of bleomycin was given on the seventh, but it wasn't hitting my husband as hard as he thought it would. He was on an upswing, and he was even back to eating some food with (very, very light) black pepper.
When he started round two, he was a little brighter and a little more positive.
On the thirteenth, we again hit the infusion center ready for the week. We'd learned what he'd want and not want as the week progressed, and we were well prepared. He worked, and I took the week off while I sat with him, focusing on his needs, and taking care of him in general. Neither of us knew what to expect, but we'd heard round two was worse than round one, so we were being cautious.
Monday through Wednesday went pretty well, but he was wiped out at the end of each day. By Thursday, he wasn't hungry anymore, and his port was really sore. Still no showers because they were leaving the port site accessed so they wouldn't have to stick him every day. You can't shower while your port is open like that. Friday, they took the needle out and he had the first shower he'd dared in over four weeks.
Saturday, he woke up complaining that the port was sore and so was his neck. I looked at it and noticed it was red, but figured it was because it had been used all week. By the way, it was still very bruised. Remember, this is four weeks from the implant date. *worry*
By Monday, it was red enough that I called the doctor's emergency number. Try to keep up here, because this begins a whirlwind of crazy.
We headed down to the office the doc was in that day and he had a nurse take cultures from the port. They infused a ton of hydration that day and got my husband an appointment with an infectious disease doctor.
Tuesday, the bleomycin was given via vein (this is the only part of the chemo treatment they can do without a central line) because the port was so red and angry looking.
Wednesday, we headed to the infectious disease guy at 9am. Cultures came back positive for several strands of staph. Dalbavancin was infused via an IV and Bactrim was prescribed. We were told the port needed to come out that day, and an appointment was made at the same place my husband had it put in for that afternoon. While we're sitting in the infusion center, our daughter's school calls and tells us she's fallen and messed up her face and knees.
Once the infusion is done, we head to the school, grab the kiddo, and go to the hospital for port removal. To give you an idea of how badly her face was jacked up, people in the hospital kept stopping and asking her if she was okay. Yeah...
So, we get the port out, and we manage to get home before 6pm. Of course, we had to pick up a prescription for pain, so I was also able to tend the girl child's face while at the pharmacy. Again, we're told he can't have a shower for seven days.
Next morning (Thursday), her face scab is super yellow. I take her to the doctor. Infected. Joy.
My husband is feeling fluish, but he had a flu shot before chemo started, so we're not worried beyond the aches in his muscles. After research, we discover this can be a side-effect of staph. Awesome. Not.
He laid in the bed all weekend and could barely walk to the mailbox without getting winded by that point.
On Monday, the order came down that the Bactrim dose needed to be doubled (just to be safe). So, rather than once a day, he began taking it twice a day.
Tuesday arrived, and we headed to the infusion center for the Bleomycin infusion. His temp was up to 99.2, but they decided to go ahead with treatment. All seemed to be going well, and he had the IV removed and got up to go to the bathroom. When he came back, he was shaking all over, and the shizz hit the fan.
Full rigors and a temperature that spiked to 104. By some miracle, one of the nurses managed to get a new IV in, and the medications started. They flooded him with fluids, hit him with demeral and phenergan, and called emergency transport. I got in the car and followed them to the hospital, freaking out.
He stayed there through Friday with a white count that was nearly zero, and they hit him with broad-spectrum antibiotics. I stayed with him and just did my Copaxone shots in the visitor's bathroom.
Before releasing him, they inserted a PICC line so chemo could continue the following Monday (we were back to the five day treatments they needed the central line for). No showers as long as the PICC was in.
He was sooooo happy. *sarcasm* Not only that, but he was a little bit traumatized from the whole experience.
Saturday morning, he woke up okay, but then after taking his meds for the day, started to shake and get a fever. After much research, we discover that everything he'd been experiencing since the staph had been found was related to a sulfa allergy. I call the doc, explain myself, and pump hubs full of motrin, tylenol, and benadryl.
He was better by that evening and continued to improve as the weekend went on. Now, because the doc was nervous about it being the bleo infusions, those were moved to Thursdays so he'd be in the office should anything go awry.
That was the last three weeks of March. We thought we were over the worst of it. Again, we couldn't have been more wrong.
April begins a whole new set of issues.
I'll get into that tomorrow.
Until then.
Friday, May 19, 2017
BEP Chemo - Round 1
February 2017
This month was harrowing. Before a person starts this particular chemotherapy, there are a few things that have to be done:
Our first major red flag was serious bruising around the port area. It was bad. Several nurses commented on it, and a couple asked if my husband was on any kind of blood thinners (he wasn't, of course). My hackles rose, and so did his. We exchanged "looks." If you're close with someone, you both know this means you're going to talk about it later and over-examine it to death.
Now, after you get a port, you can't get the area wet (shower) for at least seven days. Keep this in mind as we trudge forward. After ten days, you can remove the butterfly stitches holding the insertion area closed.
His chest was sore as hell. If we'd known/been told that it would be that bad, he would've gotten it put in a lot sooner so it would've had time to heal a little before they started poking it.
It was accessed for the first time the next Monday. They had to stick it twice to get blood return, and the nurse wasn't gentle. At all. He'd been bathing out of a bucket, and he didn't get the area wet at ALL. We were super careful in order to avoid infection.
Chemo training taught us all about care of the port, and we were told about foods to avoid, foods that might be good, and things to watch out for. We were also given an emergency number card to reach the on-call doctor. Just in case.
A few things you have to be cautious of are:
I shopped for foods I thought he might be able to keep down and that wouldn't taste bad. All the spices in my cabinet were ignored except salt. I also ordered FIT fruit and veggie wash, because everything you cook HAS to be cleaned thoroughly. Chicken broth was stocked up on. Friends sent masks, gloves, and other little care package items like sanitation wipes and chocolate Ensure.
We were ready (we thought).
Monday, February 20, 2017, we got up early and headed for the treatment center. Both of us were nervous, but I'd packed us lunch and some snacks, and we were prepared to work from there. Laptops and other things were in abundance. I probably looked like a crazy person with as many bags as I was carrying.
Once we got there, he signed in and we waited, nervous. Crazy nervous. We didn't know what to expect.
They weighed him, took his BP, and accessed his port (see note above) to draw some blood before releasing us into the ward for treatment. I grabbed a rolling desk, and he set up his laptop. A nurse came over with the bloodwork results, and she said he was good to go before explaining exactly what she was going to give him.
Steroids, anti-nausea drugs, potassium, and fluids were all given before the etoposide and cisplatin (those last two only took an hour each). We got there at 7:30am and we left at 4pm. Not kidding.
He was feeling fine, and dinner that night was a carefully constructed rice and chicken meal. I seasoned everything with only salt and chicken broth. No vomiting. Yay! He wasn't even feeling sick, but we didn't want to set anything off with seasonings of ANY kind. Better to be safe than sorry.
This repeated for the next four days. 8-4 treatment, and a bland dinner to follow. Here are some of the things I cooked (remember, just salt and/or chicken broth for seasoning):
By that Thursday, it hit him. He wasn't interested in food very much at all. He ate what he could, but he was more interested in the Ensure than anything else. Grapes, bananas, and apples were a Godsend. He loved them.
For breakfast, we'd gotten into a rhythm that included some kind of bread item before we left for chemo. Lunches I packed him always had fruit and Nature Valley granola bars (the plain honey oat ones). There was plenty of ginger ale at the treatment center, too.
Friday, February 24, 2017, after five infusions, he was tired, nauseated, and achy. Not to mention the pain he was experiencing in the port they'd been sticking all week or the fact that he still couldn't shower.
He laid in bed all weekend. Even the anti-nausea drugs they prescribed weren't cutting it, but I pressed the heck out of him to keep drinking fluids.
It was scary as hell. This strong, capable man had been reduced to a sleeping pile of goo in just five days.
We stuck to our schedule of breakfast, and he ate every morning whether he felt like it or not. He knew as well as I did that he needed something in his stomach besides chemo drugs.
Tuesday, we headed back to the infusion center for another round of bleomycin. Shockingly, he was actually starting to feel better. As the days passed, his wellness continued upward. He was feeling so much better by the time he was due to start round two, we thought it might not be nearly as bad as we expected.
Boy, were we wrong.
Round 2 (March) will be discussed Monday. I'm taking the weekend to recharge.
If you're getting ready to care for someone going through this, try and remember to wash everything, use bar soap on your hands always, and cook bland food. If you're the one about to go through it, try and be gentle with your caretaker, and don't fight them when they try to get you to do something. Open communication is the only way you're both going to survive it.
Until next time!
This month was harrowing. Before a person starts this particular chemotherapy, there are a few things that have to be done:
- Pulmonary Function Test - so they know your heart can take it
- Port Insertion - this involves putting a central line into your aorta
- ENT Dr. - for a hearing check so they know your function before/after and can detect issues
- Chemo Training - this is where they tell you what to expect over the next nine weeks
Our first major red flag was serious bruising around the port area. It was bad. Several nurses commented on it, and a couple asked if my husband was on any kind of blood thinners (he wasn't, of course). My hackles rose, and so did his. We exchanged "looks." If you're close with someone, you both know this means you're going to talk about it later and over-examine it to death.
Now, after you get a port, you can't get the area wet (shower) for at least seven days. Keep this in mind as we trudge forward. After ten days, you can remove the butterfly stitches holding the insertion area closed.
His chest was sore as hell. If we'd known/been told that it would be that bad, he would've gotten it put in a lot sooner so it would've had time to heal a little before they started poking it.
It was accessed for the first time the next Monday. They had to stick it twice to get blood return, and the nurse wasn't gentle. At all. He'd been bathing out of a bucket, and he didn't get the area wet at ALL. We were super careful in order to avoid infection.
Chemo training taught us all about care of the port, and we were told about foods to avoid, foods that might be good, and things to watch out for. We were also given an emergency number card to reach the on-call doctor. Just in case.
A few things you have to be cautious of are:
- Fever
- Disorientation
- Vomiting that won't stop
- Dehydration
I shopped for foods I thought he might be able to keep down and that wouldn't taste bad. All the spices in my cabinet were ignored except salt. I also ordered FIT fruit and veggie wash, because everything you cook HAS to be cleaned thoroughly. Chicken broth was stocked up on. Friends sent masks, gloves, and other little care package items like sanitation wipes and chocolate Ensure.
We were ready (we thought).
Monday, February 20, 2017, we got up early and headed for the treatment center. Both of us were nervous, but I'd packed us lunch and some snacks, and we were prepared to work from there. Laptops and other things were in abundance. I probably looked like a crazy person with as many bags as I was carrying.
Once we got there, he signed in and we waited, nervous. Crazy nervous. We didn't know what to expect.
They weighed him, took his BP, and accessed his port (see note above) to draw some blood before releasing us into the ward for treatment. I grabbed a rolling desk, and he set up his laptop. A nurse came over with the bloodwork results, and she said he was good to go before explaining exactly what she was going to give him.
Steroids, anti-nausea drugs, potassium, and fluids were all given before the etoposide and cisplatin (those last two only took an hour each). We got there at 7:30am and we left at 4pm. Not kidding.
He was feeling fine, and dinner that night was a carefully constructed rice and chicken meal. I seasoned everything with only salt and chicken broth. No vomiting. Yay! He wasn't even feeling sick, but we didn't want to set anything off with seasonings of ANY kind. Better to be safe than sorry.
This repeated for the next four days. 8-4 treatment, and a bland dinner to follow. Here are some of the things I cooked (remember, just salt and/or chicken broth for seasoning):
- Steak and simple salad (dressing was oil and vinegar)
- Pasta with plain butter sauce and tomatoes
- Pan fried chicken (vegetable oil only--no flour or anything--naked) with chicken stock rice and fresh green beans also cooked in chicken stock
- Soup with fresh veggies, leftover chicken, and chicken stock
- Pork chops with rice and gravy with beef stock (he didn't like the flavor of the beef stock by this point, so he went with naked rice) and a side salad
By that Thursday, it hit him. He wasn't interested in food very much at all. He ate what he could, but he was more interested in the Ensure than anything else. Grapes, bananas, and apples were a Godsend. He loved them.
For breakfast, we'd gotten into a rhythm that included some kind of bread item before we left for chemo. Lunches I packed him always had fruit and Nature Valley granola bars (the plain honey oat ones). There was plenty of ginger ale at the treatment center, too.
Friday, February 24, 2017, after five infusions, he was tired, nauseated, and achy. Not to mention the pain he was experiencing in the port they'd been sticking all week or the fact that he still couldn't shower.
He laid in bed all weekend. Even the anti-nausea drugs they prescribed weren't cutting it, but I pressed the heck out of him to keep drinking fluids.
It was scary as hell. This strong, capable man had been reduced to a sleeping pile of goo in just five days.
We stuck to our schedule of breakfast, and he ate every morning whether he felt like it or not. He knew as well as I did that he needed something in his stomach besides chemo drugs.
Tuesday, we headed back to the infusion center for another round of bleomycin. Shockingly, he was actually starting to feel better. As the days passed, his wellness continued upward. He was feeling so much better by the time he was due to start round two, we thought it might not be nearly as bad as we expected.
Boy, were we wrong.
Round 2 (March) will be discussed Monday. I'm taking the weekend to recharge.
If you're getting ready to care for someone going through this, try and remember to wash everything, use bar soap on your hands always, and cook bland food. If you're the one about to go through it, try and be gentle with your caretaker, and don't fight them when they try to get you to do something. Open communication is the only way you're both going to survive it.
Until next time!
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