It's Monday morning and I get a phone call from Dr. Julie Asch at LDS Hospital.
She starts, a little hesitantly, "So you had a PET scan on Friday."
"Yep, and I've already read the results. I told my husband in the ER on Saturday after reading the report that it looks like the Hodgkins is back. This time, it's centered around my trachea. It's really small though because we caught it fast. Maybe two doses of chemo will kill it?"
She laughs. "You're right. And exactly along the lines that I was thinking. So it's good we're both on board."
"I predicted this would happen--that the Hodgkins would come back if we had to wait more than four months after the radiation was over for my heart to heal before we proceeded to the second bone marrow transplant."
"After you're done with these cancer treatments, I'm going to hire you."
"No, I know my own body well, but I can't do this for anyone else."
"Well, I'll turn you over to Dr. Wendy then for a few more chemo treatments, and see you when that's over."
Later that night, I ask Dale how he's feeling. To me, this occurrence is just a hiccup, a slight detour from the path. But how is he feeling to know that I have cancer for the fifth freaking time?
And he concurs. "It's just a hiccup, Trish."
We must be the weirdest people in the world. I'm sure some people would be in a major depression to hear that they have cancer; some probably contemplate suicide or think their life is practically over with such a diagnosis.
Us? It's just a hiccup. No biggie.
Purple Everywhere
Daily Herald picture
Monday, October 7, 2013
Saturday, October 5, 2013
Time For the Second Bone Marrow Transplant Yet
It's the end of September when cardiac rehab is finished (or I decide I'm finished with it), so time to start talking about the second bone marrow transplant.
Rachael calls to let me know she'll start scheduling tests, and I ask her if we can start with a PET scan.
Call me paranoid, but it's been about four months since the last radiation treatment, and my back is itchy again. It's itchy in a slightly different place than it has been in the past when I've had Hodgkins, but I'm thinking the cancer is back again.
She says I've earned the right to be paranoid and I know my body, so she'll schedule the PET scan.
***************
It's set for the hospital off 5300 South in the Salt Lake valley for Friday, October 4 at 9:30 a.m.
It goes really smoothly.
***************
However, the day after, my stomach really hurts--bad.
I try to deal with it all day, but later that evening, it's getting worse, and I'm starting to feel nauseous. I wonder if it's my gallbladder or something else going wrong.
Dale's still at work, but I finally decide I'd better go to the ER before I do some serious damage to my body from ignoring the pain.
In the ER, I tell the doctor my four ideas for what's causing the pain:
* My gallbladder. (Nope, wrong side.)
* Something to do with radiation treatments. (No, that wouldn't cause this kind of pain so long after treatment.)
* Some effect from stopping steroids without gradually weaning off them. (Probably not because I wasn't taking what's usually thought of as high-dose steroids, which do need to be tapered off gradually. However, there is some merit to my idea.)
* Some hernia or strange other problem. (Not sure.)
He decides to do a CT scan, when I mention to him that I just had a PET/CT scan at an IHC hospital yesterday. He could probably pull up the results and see the area of my abdomen that's hurting.
He asks if I want pain medication, but I refuse. I'm tough. I'm not one of those people that come to the ER seeking pain killers. It's okay.
About two hours later, I acquiesce though and ask for something to help with the pain. It's immediately effective. Why did I wait so long?
And he comes with a copy of the PET results. After skimming them, I announce to Dale, "Okay, so it looks like the Hodgkins is back. This time, it's centered around my trachea. It's really small though. We caught it fast. Maybe two doses of chemo would kill it?"
After running another CT scan (because yesterday's didn't show that area well), the ER doctor figures out that I probably have gastritis from the steroids, tells me to eat an all-liquid diet for 2 days, and sends me home.
Rachael calls to let me know she'll start scheduling tests, and I ask her if we can start with a PET scan.
Call me paranoid, but it's been about four months since the last radiation treatment, and my back is itchy again. It's itchy in a slightly different place than it has been in the past when I've had Hodgkins, but I'm thinking the cancer is back again.
She says I've earned the right to be paranoid and I know my body, so she'll schedule the PET scan.
***************
It's set for the hospital off 5300 South in the Salt Lake valley for Friday, October 4 at 9:30 a.m.
It goes really smoothly.
***************
However, the day after, my stomach really hurts--bad.
I try to deal with it all day, but later that evening, it's getting worse, and I'm starting to feel nauseous. I wonder if it's my gallbladder or something else going wrong.
Dale's still at work, but I finally decide I'd better go to the ER before I do some serious damage to my body from ignoring the pain.
In the ER, I tell the doctor my four ideas for what's causing the pain:
* My gallbladder. (Nope, wrong side.)
* Something to do with radiation treatments. (No, that wouldn't cause this kind of pain so long after treatment.)
* Some effect from stopping steroids without gradually weaning off them. (Probably not because I wasn't taking what's usually thought of as high-dose steroids, which do need to be tapered off gradually. However, there is some merit to my idea.)
* Some hernia or strange other problem. (Not sure.)
He decides to do a CT scan, when I mention to him that I just had a PET/CT scan at an IHC hospital yesterday. He could probably pull up the results and see the area of my abdomen that's hurting.
He asks if I want pain medication, but I refuse. I'm tough. I'm not one of those people that come to the ER seeking pain killers. It's okay.
About two hours later, I acquiesce though and ask for something to help with the pain. It's immediately effective. Why did I wait so long?
And he comes with a copy of the PET results. After skimming them, I announce to Dale, "Okay, so it looks like the Hodgkins is back. This time, it's centered around my trachea. It's really small though. We caught it fast. Maybe two doses of chemo would kill it?"
After running another CT scan (because yesterday's didn't show that area well), the ER doctor figures out that I probably have gastritis from the steroids, tells me to eat an all-liquid diet for 2 days, and sends me home.
Wednesday, June 26, 2013
Cardiac Rehab
A week after surgery, I'm feeling pretty well and am cleared to start cardiac rehabilitation (rehab).
What the heck?
It's exercising at low intensities, while being carefully monitored, in a hospital setting, so they can make sure my new heart valve is behaving.
So I start about 10 weeks of walking on a treadmill and riding a recumbent bike while having my BP, heart rate, and O2 levels checked regularly, and while being hooked up to a heart monitor.
Because our insurance is Blue Cross/Blue Shield, I get to drive to Timpanogos Regional Hospital and attend rehab there.
We start really slow at 7 minutes of walking and 7 minutes of biking at really low speeds.
The goal is to build up to about 30 minutes of each, with gradually increasing speeds and intensities.
Penny, the RN assigned to rehab, is great to work with--thankfully. Otherwise, I'm not sure how dedicated I'd be to this whole routine. And her schedule is pretty flexible--anytime between 9 a.m. and about 3:30 p.m. works.
But, when am I supposed to be able to work? All of these follow up appointments are killing my available hours.
With about three weeks left, our insurance changes, so I have to switch to doing cardiac rehab at UVRMC in Provo. Yeah, that's not much fun. Plus, their protocols are so different.
At Timp, there were at most three other patients. Usually, it was just one other patient besides me, using the 2 treadmills and 2 recumbent bicycles.
At UVRMC, there are about 30 other patients in a huge room, with about 15 treadmills, 5 recumbent bikes, and some different equipment I've never seen before. Plus, they have very specific protocols about the two-hour time window they run rehab, wearing name tags, signing in, doing warm ups, waiting for someone to help you before moving to the next part of your routine.
It's a giant pain--not to mention the even longer drive. Now I have to pass American Fork Hospital and Timpanogos Regional Hospital before getting to UVRMC.
They tell me that their protocol is to get people to tolerate 60 minutes of activity. I'm already there and at a higher intensity than any other patients, so they're advancing to Phase 3 of rehab.
If they think I'm good enough, I decide I'm good enough too. I don't show up for my scheduled Phase 3 appointment, and no one calls to follow up, so I drop out and don't go back.
What the heck?
It's exercising at low intensities, while being carefully monitored, in a hospital setting, so they can make sure my new heart valve is behaving.
So I start about 10 weeks of walking on a treadmill and riding a recumbent bike while having my BP, heart rate, and O2 levels checked regularly, and while being hooked up to a heart monitor.
Because our insurance is Blue Cross/Blue Shield, I get to drive to Timpanogos Regional Hospital and attend rehab there.
We start really slow at 7 minutes of walking and 7 minutes of biking at really low speeds.
The goal is to build up to about 30 minutes of each, with gradually increasing speeds and intensities.
Penny, the RN assigned to rehab, is great to work with--thankfully. Otherwise, I'm not sure how dedicated I'd be to this whole routine. And her schedule is pretty flexible--anytime between 9 a.m. and about 3:30 p.m. works.
But, when am I supposed to be able to work? All of these follow up appointments are killing my available hours.
With about three weeks left, our insurance changes, so I have to switch to doing cardiac rehab at UVRMC in Provo. Yeah, that's not much fun. Plus, their protocols are so different.
At Timp, there were at most three other patients. Usually, it was just one other patient besides me, using the 2 treadmills and 2 recumbent bicycles.
At UVRMC, there are about 30 other patients in a huge room, with about 15 treadmills, 5 recumbent bikes, and some different equipment I've never seen before. Plus, they have very specific protocols about the two-hour time window they run rehab, wearing name tags, signing in, doing warm ups, waiting for someone to help you before moving to the next part of your routine.
It's a giant pain--not to mention the even longer drive. Now I have to pass American Fork Hospital and Timpanogos Regional Hospital before getting to UVRMC.
They tell me that their protocol is to get people to tolerate 60 minutes of activity. I'm already there and at a higher intensity than any other patients, so they're advancing to Phase 3 of rehab.
If they think I'm good enough, I decide I'm good enough too. I don't show up for my scheduled Phase 3 appointment, and no one calls to follow up, so I drop out and don't go back.
Friday, June 21, 2013
Doctor With Strange Sense of Humor
The only remarkable thing about my three-day stay in the hospital while recovering from the TAVR was one of the attending doctors that was following me.
I think his name was Jonathen?
Anyway, the morning after surgery he came to check on me. I think he was trying to be funny, but he didn't introduce himself or what his role in my care was and started with, "Why are you still here? Haven't you left yet?"
Huh?
"I just had my aortic valve replaced."
"I know. But the guy we did before you has already been discharged."
"And he had his aortic valve replaced?"
"Yep. Same as you."
"Through his ribs?"
"No. Through his right groin."
"Well, that's different. If you're going to compare apples to apples. It's a complete different surgery, and one that's much easier to recover from."
All I got in response was a shrug. Weird!
Then he says, "Well, you're not still on pain medicines, are you? We need to get you off those."
Really? I can tolerate pain pretty well, but I'm in quite a bit of pain--from the chest tubes and especially when I cough.
In general though, I try to figure out people's expectations and then do everything I can to exceed them. I'm a pleaser by nature, so I immediately start trying to figure out how to at least reduce the amount of pain medication I'm taking.
The next day when he comes to check on me, I'm prepared.
I announce, "Hey, I'm down to taking pain medications only every six hours."
He doesn't let me finish before he cuts me off with "Trish, you just had your aortic valve replaced; and we had to go through your ribs. I don't want you even thinking about reducing your pain mediation yet."
What? Now I'm really confused. When I mentioned how strange and confusing his conversations were to Sally, she says that he just has a really odd manner and not to worry about it too much because I definitely can't change him.
It turns out that open heart surgery is actually easier and less painful to heal from because there are hardly any nerves around your sternum, yet your ribs are wrapped with lots of nerves. Interesting.
I think his name was Jonathen?
Anyway, the morning after surgery he came to check on me. I think he was trying to be funny, but he didn't introduce himself or what his role in my care was and started with, "Why are you still here? Haven't you left yet?"
Huh?
"I just had my aortic valve replaced."
"I know. But the guy we did before you has already been discharged."
"And he had his aortic valve replaced?"
"Yep. Same as you."
"Through his ribs?"
"No. Through his right groin."
"Well, that's different. If you're going to compare apples to apples. It's a complete different surgery, and one that's much easier to recover from."
All I got in response was a shrug. Weird!
Then he says, "Well, you're not still on pain medicines, are you? We need to get you off those."
Really? I can tolerate pain pretty well, but I'm in quite a bit of pain--from the chest tubes and especially when I cough.
In general though, I try to figure out people's expectations and then do everything I can to exceed them. I'm a pleaser by nature, so I immediately start trying to figure out how to at least reduce the amount of pain medication I'm taking.
The next day when he comes to check on me, I'm prepared.
I announce, "Hey, I'm down to taking pain medications only every six hours."
He doesn't let me finish before he cuts me off with "Trish, you just had your aortic valve replaced; and we had to go through your ribs. I don't want you even thinking about reducing your pain mediation yet."
What? Now I'm really confused. When I mentioned how strange and confusing his conversations were to Sally, she says that he just has a really odd manner and not to worry about it too much because I definitely can't change him.
It turns out that open heart surgery is actually easier and less painful to heal from because there are hardly any nerves around your sternum, yet your ribs are wrapped with lots of nerves. Interesting.
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