Time to meet with Dr. Jerry, cardiologist, and review the results of some of yesterday's tests. He was so good to squeeze me into his already overbooked schedule. I left a message last night with BMT to say I managed to get an expedited appointment, and I need to get the results of the EKG and echocardiogram to take with me today, However, I haven't heard anything. So at 9:00 a.m. I call BMT to see how to get the results for my 10:00 appointment. Nothing like having an urgent deadline!
Still trying to get the bone marrow transplant scheduled for sometime next week.
We meet with Brad, the PA, first. He's not very encouraging.
We've been watching my aortic valve for about five years. It was damaged by the radiation I got 36 years ago and needs to be replaced when it measures less than .75. (That's a fun discussion to have. Do I want it replaced with a pig valve that requires more daily medications and has a higher risk of rejection or a mechanical one, which will make a funny audible sound if you're close to me?)
Measurement from the echocardiogram? .64. NO! My heart feels like it skips a beat. No pun intended. How do we fit a heart valve transplant in with a bone marrow transplant? Which has priority? If we need to strengthen the heart so it survives the bone marrow process, cancer isn't usually patient so what does that mean? If we proceed with the bone marrow, will that weaken my heart so much that I won't survive? I did not expect this at all. Shoot!
What do we do now? I volunteer that the technician really wasn't very good. She often couldn't find what she was looking for and I now have about six bruises from the amount of pressure she used in different positions to try and find the place. Is there any chance that it was just a bad scan?
Dr. Jerry comes in at this point to weigh in. He agrees with my possible explanation, so we need to do another type of test to try and get a more accurate number. Do I want a TTE (transesophageal echocardiogram)--a small video recording device shoved down my throat so they can get closer to the aorta? I've had one of those. All that gag reflex jumping in and a very sore throat afterwards? What's my other option? A heart catheterization. Oh, I've had 3-4 of those. Access the inguinal arteries and veins in my right leg (of course, because the scar tissue and healing incision from the biopsy is still in my left leg) and thread a wire up into the heart. That's the option I want. Plus, while they're already there, they can enter the lungs and get an accurate reading of my pulmonary hypertension, which Dr. Mike, pulmonologist, would love to review on Friday. He's been bugging me for another heart cath for the last year or so.
We have a plan. Now we just have to schedule it, which goes from bad (.64 reading) to worse. Dr. Jerry recently moved and is no longer a covered provider or has privileges at a covered hospital. Shoot again! He can recommend a former colleague to me, but it's definitely not what I want.
After several phone calls to my insurance and various hospitals around Utah and Salt Lake counties, I finally decide we'd better go with the covered provider and hospital, so our medical bills don't escalate.
I start praying at this point that we're able to get the cath scheduled soon--next week, if possible. Several more phone calls and Brad returns my call. Success! Dr. Carter can do it Tuesday morning at UVRMC in Provo if that works with my schedule. I'll make it work.
I'm supposed to meet with Dr. Wendy on Tuesday, but I think she's easier to reschedule than trying to get another heart cath appointment. I'll take Tuesday, with Dr. Carter, in the UVRMC heart lab. Do I need a weapon to finalize my choice (like the game Clue?). Oh, the weapons are scalpels and hemostats and wires. I win!
Purple Everywhere
Daily Herald picture
Tuesday, August 9, 2011
Friday, August 5, 2011
Thursday, August 4, 2011
Test day at LDS Hospital. Dale's schedule freed up so he can go with me. I'm glad, but I don't feel like I need him to.
Okay, find cardiology on the 7th floor for an echocardiogram and EKG. Easy stuff and nothing new there.
Down to the 6th floor and the pulmonary lab for breathing tests. How much can you blow out and how much can you suck in? Easy again.
Up to the 8th floor for lab work. Should be easy again. Sure! There are so many tubes to fill with blood (about 29) that the lab tech needs someone else to hand them to her. She's afraid my veins aren't going to hold out. We joke about her sucking out all my blood and then saving the last tube for the CBC to count blood cells.
At one point, I have her trying to give me information, the BMT coordinator talking to me about possibly speeding up the timing of the transplant, another tech putting a medical bracelet on me (to make labels for all those vials of blood), Dale trying to tell me what the plumber at our house is finding, a student nurse watching and trying to help, and 2-3 others popping in for various questions. How many people does it take to collect my blood? 5-7, depending on what point we're at in the process.
And we're not finished yet. They need a urine sample and a rectal swab(!) before they can let me go. Now that there's no dignity left in the world, I proceed to the 1st floor and radiology.
An easy chest x-ray later and Dale and I successfully navigate the long maze of temporary hospital corridors back to the makeshift hospital entrance (while they construct a new main entrance over the next 6-7 months). We almost make it to the valet station out in the driveway, when my cell phone rings.
"Trish? Are you still close to the hospital? We need you to come back to the 8th floor. You're platelet counts are dangerously low and we need to transfuse a unit." Oh joy!
We meander slowly back through the maze of corridors, up to the 8th floor, and spend another 1.5 hours waiting for yellow blood products to slowly drip through my port. But that's not quite enough because my red blood cells, hemoglobin, and hematocrit are also low. Not dangerously low and needing an immediate transfusion, but low enough that I need an order for another CBC at AF Hospital on Saturday morning. Then, I get to wait until the results are phoned in to LDS Hospital so they can decide if I need to head back to LDS on Saturday afternoon for another transfusion.
Whew! I'm tired. I'm even more tired now that I know how low my blood counts are. Can I just go home and sleep? Please? And I was thinking that Dale didn't need to come today.
Okay, find cardiology on the 7th floor for an echocardiogram and EKG. Easy stuff and nothing new there.
Down to the 6th floor and the pulmonary lab for breathing tests. How much can you blow out and how much can you suck in? Easy again.
Up to the 8th floor for lab work. Should be easy again. Sure! There are so many tubes to fill with blood (about 29) that the lab tech needs someone else to hand them to her. She's afraid my veins aren't going to hold out. We joke about her sucking out all my blood and then saving the last tube for the CBC to count blood cells.
At one point, I have her trying to give me information, the BMT coordinator talking to me about possibly speeding up the timing of the transplant, another tech putting a medical bracelet on me (to make labels for all those vials of blood), Dale trying to tell me what the plumber at our house is finding, a student nurse watching and trying to help, and 2-3 others popping in for various questions. How many people does it take to collect my blood? 5-7, depending on what point we're at in the process.
And we're not finished yet. They need a urine sample and a rectal swab(!) before they can let me go. Now that there's no dignity left in the world, I proceed to the 1st floor and radiology.
An easy chest x-ray later and Dale and I successfully navigate the long maze of temporary hospital corridors back to the makeshift hospital entrance (while they construct a new main entrance over the next 6-7 months). We almost make it to the valet station out in the driveway, when my cell phone rings.
"Trish? Are you still close to the hospital? We need you to come back to the 8th floor. You're platelet counts are dangerously low and we need to transfuse a unit." Oh joy!
We meander slowly back through the maze of corridors, up to the 8th floor, and spend another 1.5 hours waiting for yellow blood products to slowly drip through my port. But that's not quite enough because my red blood cells, hemoglobin, and hematocrit are also low. Not dangerously low and needing an immediate transfusion, but low enough that I need an order for another CBC at AF Hospital on Saturday morning. Then, I get to wait until the results are phoned in to LDS Hospital so they can decide if I need to head back to LDS on Saturday afternoon for another transfusion.
Whew! I'm tired. I'm even more tired now that I know how low my blood counts are. Can I just go home and sleep? Please? And I was thinking that Dale didn't need to come today.
Wednesay, August 3, 2011
It's so hard to breathe. I can take a few steps, very slowly, and feel the world caving in on me and blacking out around me.
Walking 2.5 blocks to the bus stop used to be fairly easy. Now, I have to stop about every ten steps and try to calm my heart and my lungs so I can keep going. I've already missed the bus once this week and had to wait 40 minutes until the next one came.
This feels like when I had clots in my lungs about three years ago, except that the feeling happened more gradually this time, over the course of the last week, instead of over two days.
Crud! I wonder what this means. Let's go to the doctor's office and see what my blood pressure and oxygen levels are like. O2: 84% and dropping, 83, 82, 80, 79. Okay, that's not good at all. I was hoping for at least 92%. Blood pressure: 183/103. Double crud! So my body isn't getting enough oxygen and my heart is working harder to try and compensate.
Dale, is there any point in putting off the inevitable--an ER visit? Anything else to try? Anything else to check? Drat! Is this a busy time for the ER? No. Would I rather wait until it's worse and have to come back at 1 or 3 a.m. tonight? No. Okay. Let's go.
I don't want the ER to spend a lot of time trying to rule out the universe when I'm only concerned with one, life-threatening thing, so I walk in prepared and armed.
Look! I'm having trouble breathing. The doctor's office just measured my O2 and it was 80 and dropping. My blood pressure was 183/103. I have a history of PEs, and I'd just like to ensure that I don't have them again.
"Follow me back to room 10 please. I'm Stephanie and will be organizing this little party for you today. Let me get the doctor."
He wants to know what my pertinent history is--Good thing he clarified that. We don't have three years for him to review my full medical history--and what brought me to this point. It still takes 15 mintues to recount the critical facts for the day, but he agrees that we ought to rule out PEs at least.
He offers to draw blood work, but realizes that Dr. Wendy is watching it pretty carefully. He also offers to do a cardiac workup because that's pretty normal when the lungs seem compromised. No thanks. Just rule out PEs please.
That CAT scan comes back clear. Hooray! No more 9-day hospital stays. We both figure that it's probably the chemo that's causing the dyspnea--especially since one of the drugs is know to cause lung toxicities and dizziness.
The best part of the whole visit and the part that makes it (almost) worthwhile? They were able to pull up the PET scan from yesterday and print the results for me. It didn't show any unknown lung issues. Most importantly, it also showed no more Hodgkins! There was some slight activity in the lymph nodes but so little it cannot be called cancerous activity.
Hooray! That means that we don't have to do any more ICE chemo and can proceed more quickly to the bone marrow transplant. Not that I'm so excited about getting to that point, but the quicker we're there, the quicker we can be on the road to recovery and, hopefully, cure!
Walking 2.5 blocks to the bus stop used to be fairly easy. Now, I have to stop about every ten steps and try to calm my heart and my lungs so I can keep going. I've already missed the bus once this week and had to wait 40 minutes until the next one came.
This feels like when I had clots in my lungs about three years ago, except that the feeling happened more gradually this time, over the course of the last week, instead of over two days.
Crud! I wonder what this means. Let's go to the doctor's office and see what my blood pressure and oxygen levels are like. O2: 84% and dropping, 83, 82, 80, 79. Okay, that's not good at all. I was hoping for at least 92%. Blood pressure: 183/103. Double crud! So my body isn't getting enough oxygen and my heart is working harder to try and compensate.
Dale, is there any point in putting off the inevitable--an ER visit? Anything else to try? Anything else to check? Drat! Is this a busy time for the ER? No. Would I rather wait until it's worse and have to come back at 1 or 3 a.m. tonight? No. Okay. Let's go.
I don't want the ER to spend a lot of time trying to rule out the universe when I'm only concerned with one, life-threatening thing, so I walk in prepared and armed.
Look! I'm having trouble breathing. The doctor's office just measured my O2 and it was 80 and dropping. My blood pressure was 183/103. I have a history of PEs, and I'd just like to ensure that I don't have them again.
"Follow me back to room 10 please. I'm Stephanie and will be organizing this little party for you today. Let me get the doctor."
He wants to know what my pertinent history is--Good thing he clarified that. We don't have three years for him to review my full medical history--and what brought me to this point. It still takes 15 mintues to recount the critical facts for the day, but he agrees that we ought to rule out PEs at least.
He offers to draw blood work, but realizes that Dr. Wendy is watching it pretty carefully. He also offers to do a cardiac workup because that's pretty normal when the lungs seem compromised. No thanks. Just rule out PEs please.
That CAT scan comes back clear. Hooray! No more 9-day hospital stays. We both figure that it's probably the chemo that's causing the dyspnea--especially since one of the drugs is know to cause lung toxicities and dizziness.
The best part of the whole visit and the part that makes it (almost) worthwhile? They were able to pull up the PET scan from yesterday and print the results for me. It didn't show any unknown lung issues. Most importantly, it also showed no more Hodgkins! There was some slight activity in the lymph nodes but so little it cannot be called cancerous activity.
Hooray! That means that we don't have to do any more ICE chemo and can proceed more quickly to the bone marrow transplant. Not that I'm so excited about getting to that point, but the quicker we're there, the quicker we can be on the road to recovery and, hopefully, cure!
Tuesday, August 2, 2011
Today's PET/CT scan was pretty unremarkable.
Get finger poked for fasting glucose level (96) and creatine (good). Wait for my port to be accessed, flushed, injected with radioactive sugar, flushed again, drink cranberry juice-like contrast, take PET scans, have port injected with more contrast, finish CT portion, flush port again and deaccess it.
The worst part for me is having to wait in a dark room for an hour while the radioactive isotope looks for any cancer cells, which are always hungry for sugar. I'm convinced you can literally drive yourself insane if you're alone with just your thoughts and let them roam rampantly and unbridled.
What will the scans show today? What if I don't lie as absolutely still as possible and give myself false readings on the scans? What if the scans show that the chemo isn't touching the lymph nodes? They still feel as large to me as they did at first. What if I need more chemo? What if I need several more rounds of chemo? What if the chemo doesn't work? What's the next step? What if we can never do the transplant? What would Dale do if I die?
OKAY. ENOUGH! Time to stop that train of thought immediately.
Where's your faith, Trish? Yes, you have no control over any of this--except to proceed with faith and a positive approach and learn and grow.
Bottom line: does it matter if I live on the earth a bit longer or die tomorrow as long as I know that Heavenly Father lives, that my Savior lives, that they love me, that they want the best for me, and that I want to follow them and become more like them? What else really matters or could possibly supercede that knowledge and desire? Certainly not silly old afflictions of the mortal body only--like cancer.
Just breathe, Trish. This too shall pass.
I ask to see the pictures from the scans and don't see any orange glowing orbs this time. I'm hoping that means good news and not the more probable--that I have no clue what I'm looking at or for. I give my professional and scientific findings to Dale. No orange glowing orbs = no more chemo.
We'll see :-)
Get finger poked for fasting glucose level (96) and creatine (good). Wait for my port to be accessed, flushed, injected with radioactive sugar, flushed again, drink cranberry juice-like contrast, take PET scans, have port injected with more contrast, finish CT portion, flush port again and deaccess it.
The worst part for me is having to wait in a dark room for an hour while the radioactive isotope looks for any cancer cells, which are always hungry for sugar. I'm convinced you can literally drive yourself insane if you're alone with just your thoughts and let them roam rampantly and unbridled.
What will the scans show today? What if I don't lie as absolutely still as possible and give myself false readings on the scans? What if the scans show that the chemo isn't touching the lymph nodes? They still feel as large to me as they did at first. What if I need more chemo? What if I need several more rounds of chemo? What if the chemo doesn't work? What's the next step? What if we can never do the transplant? What would Dale do if I die?
OKAY. ENOUGH! Time to stop that train of thought immediately.
Where's your faith, Trish? Yes, you have no control over any of this--except to proceed with faith and a positive approach and learn and grow.
Bottom line: does it matter if I live on the earth a bit longer or die tomorrow as long as I know that Heavenly Father lives, that my Savior lives, that they love me, that they want the best for me, and that I want to follow them and become more like them? What else really matters or could possibly supercede that knowledge and desire? Certainly not silly old afflictions of the mortal body only--like cancer.
Just breathe, Trish. This too shall pass.
I ask to see the pictures from the scans and don't see any orange glowing orbs this time. I'm hoping that means good news and not the more probable--that I have no clue what I'm looking at or for. I give my professional and scientific findings to Dale. No orange glowing orbs = no more chemo.
We'll see :-)
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