Today did NOT go according to plan. In fact, last night as we were going to sleep, I said to Stephen, "the worst thing that could happen is if Dr. Naqvi comes up with something completely different than Fleener. Then, where will we be??" Well, I guess I have to do things the hard way.
We had planned to have a second opinion with Naqvi and to also ask her HOW THIS WAS MISSED????? When we got there, we found out that the office hadn't received any of the scans or reports. WHAT? I have been in contact with both doctors on sharing information! Well, I had copies of the CT scan of my brain and of the original MRI.
Based on those, Dr. Naqvi wasn't convinced. She came in and questioned everything. "How do they think this is CANCER? What are they basing it on? It could be arthritis." (At this point, this is pretty much how we felt:)
Are you serious? ARTHRITIS!!!???? HOW IN THE WORLD would arthritis be in all of my spine and other bones without joints, like the sternum, and NOT in....um....my hands?
I did agree with some points she made such as, we should have a biopsy done to figure out the pathology and to know exactly what we were dealing with. She thought I was crazy for scheduling radiation markers and initial appointments with a surgeon to place my port. "No, no, no, no! You don't even have the proof!" We need blood work, MRI with and without contrast, and a biopsy.
She left to call to make STAT orders, since it is quite difficult for me to come back and forth from College Station to Houston for MORE tests days in and days out. I used this extra time to call Fleener's office and have them fax over the PET scan report.
Naqvi came back in and asked what I was taking for pain control. My answers didn't meet what she felt I needed. "That's not strong enough. We need to get you on something better." I found this interesting, as for the PAST TWO check-ups, I've been complaining about pain that "feels like it's under my breast, like it's IN MY BONES!" And, she wasn't concerned and actually talked me out of refilling my Lortabs and going down to Tylenol 3. Ironic that this same drug SHE PRESCRIBED is now not strong enough. Hmmmmm......apparently I wasn't playing around just to get more pain meds! In preparation for the tests of the day, I got a pain shot and Naqvi even asked if I wanted some valium or Xanax to calm me for the MRI. I'm fine.
Just then, my PET scan reports came in. I hadn't even seen the official report, only received the explanation of it over the phone. The findings say that there is correlation made with the MRI I already had. "Extensive hyper metabolic skeletal lesions are seen, including the spine, pelvis, proximal femurs and humeri, bilateral ribs, scapula, and sternum. There are hyper metabolic mediastinal and bilateral hilar lymph nodes. No hyper metabolic axillary or internal mammary lymph nodes, pulmonary nodules, liver, or adrenal lesions are seen.
There is physiologic activity in the FI and GU tracts.
The CT scan used for attenuation correction demonstrates no evidence of pleural effusion or ascites. Numerous lytic lesions are seen in the skeleton.
Impression:
findings are consistent with extensive metastatic disease.
We were waiting at the check-out desk when Dr. Naqvi read this, and it seemed as if her theory of this being anything BUT cancer was starting to become doubtful. "Well, let's HOPE I'm right and this is NOT cancer."
We headed down with orders for blood work, a prescription for 100 Lortab, and check-in papers for a STAT MRI.
Then, the FUN part started. At the registration desk, we were told it didn't look very promising for us to get in to an MRI today, as they had 2 sedation cases scheduled. We could check in, but might be waiting for 5-6 hours!!! We checked in at imaging and tried to be extra kind to the ladies at the desk. I kept hearing a phone call about STAT orders for "Copper." (surely they mean COOPER?!) Shortly after that, one of the nurses came out to explain they had a "cancelectomy," as in the sedation case was cancelled because the patient ate this morning! That meant, I was in!!!! All we needed was to find the radiologist, Dr. Polacik and have him come talk to me. When Dr. P came out, he was questioning why we needed this test done, especially because Dr. Naqvi had also faxed over orders for a chest CT. We showed him our previous reports and started to explain the story of this crazy summer and how we got here. Even after seeing evidence of the previous studies, he was still inclined to back up Naqvi and has reservations about the findings. Until he looked down and noticed Stephen's AGGIE RING and that unspoken bond of the Aggie Network kicked in. We suddenly had an "in," which came in handy for the rest of the day.
I went back, changed, and waited. Finally, it was time for an IV----my least favorite thing! I specifically explain that I am a hard stick and that my veins seem like they are great, but roll. Some people think they are better than my personal experience with EVERY OTHER MEDICAL PROFESSIONAL that has screwed up an IV on me. He got it in....sort of....and dug around for about 4 minutes until he finally got it right.
The MRI was long, about 40 minutes for each test--without contrast and with contrast.
I was taken into the holding area and waited and waited for my next instructions.
The nurse went out to catch Stephen up, as he was waiting alone for over 2 hrs. with no news up to this point. She also came back and explained that we were trying to schedule whether to do the CT or the biopsy and if they were both necessary. She was waiting to hear from the Doctor, but couldn't find him. (He was actually out talking to Stephen. After reading the MRI, he had to hear the whole story of why I needed the original MRI and that it wasn't to discover cancer, but to identify fractures or the causes of my pain.) The nurse found him, but didn't want to interrupt, as he was meeting with another radiologist to discuss my case.
Doctor P. found me and explained that, YES, there was a definite need for a biopsy, and we were going to do a CT with and without contrast.
(By the way, I think I might have met my radiation limit for the year in the last 2 weeks!!!!)
I went around to the pre-op area, and Stephen was FINALLY able to come talk to me. It was after 2:00 o'clock by this time. {My original appointment was at 9:30.} They prepared me to go back, after checking with me about a million times to make sure I'm not pregnant!
We had planned to have a second opinion with Naqvi and to also ask her HOW THIS WAS MISSED????? When we got there, we found out that the office hadn't received any of the scans or reports. WHAT? I have been in contact with both doctors on sharing information! Well, I had copies of the CT scan of my brain and of the original MRI.
Based on those, Dr. Naqvi wasn't convinced. She came in and questioned everything. "How do they think this is CANCER? What are they basing it on? It could be arthritis." (At this point, this is pretty much how we felt:)
Are you serious? ARTHRITIS!!!???? HOW IN THE WORLD would arthritis be in all of my spine and other bones without joints, like the sternum, and NOT in....um....my hands?
I did agree with some points she made such as, we should have a biopsy done to figure out the pathology and to know exactly what we were dealing with. She thought I was crazy for scheduling radiation markers and initial appointments with a surgeon to place my port. "No, no, no, no! You don't even have the proof!" We need blood work, MRI with and without contrast, and a biopsy.
She left to call to make STAT orders, since it is quite difficult for me to come back and forth from College Station to Houston for MORE tests days in and days out. I used this extra time to call Fleener's office and have them fax over the PET scan report.
Naqvi came back in and asked what I was taking for pain control. My answers didn't meet what she felt I needed. "That's not strong enough. We need to get you on something better." I found this interesting, as for the PAST TWO check-ups, I've been complaining about pain that "feels like it's under my breast, like it's IN MY BONES!" And, she wasn't concerned and actually talked me out of refilling my Lortabs and going down to Tylenol 3. Ironic that this same drug SHE PRESCRIBED is now not strong enough. Hmmmmm......apparently I wasn't playing around just to get more pain meds! In preparation for the tests of the day, I got a pain shot and Naqvi even asked if I wanted some valium or Xanax to calm me for the MRI. I'm fine.
Just then, my PET scan reports came in. I hadn't even seen the official report, only received the explanation of it over the phone. The findings say that there is correlation made with the MRI I already had. "Extensive hyper metabolic skeletal lesions are seen, including the spine, pelvis, proximal femurs and humeri, bilateral ribs, scapula, and sternum. There are hyper metabolic mediastinal and bilateral hilar lymph nodes. No hyper metabolic axillary or internal mammary lymph nodes, pulmonary nodules, liver, or adrenal lesions are seen.
There is physiologic activity in the FI and GU tracts.
The CT scan used for attenuation correction demonstrates no evidence of pleural effusion or ascites. Numerous lytic lesions are seen in the skeleton.
Impression:
findings are consistent with extensive metastatic disease.
We were waiting at the check-out desk when Dr. Naqvi read this, and it seemed as if her theory of this being anything BUT cancer was starting to become doubtful. "Well, let's HOPE I'm right and this is NOT cancer."
We headed down with orders for blood work, a prescription for 100 Lortab, and check-in papers for a STAT MRI.
Then, the FUN part started. At the registration desk, we were told it didn't look very promising for us to get in to an MRI today, as they had 2 sedation cases scheduled. We could check in, but might be waiting for 5-6 hours!!! We checked in at imaging and tried to be extra kind to the ladies at the desk. I kept hearing a phone call about STAT orders for "Copper." (surely they mean COOPER?!) Shortly after that, one of the nurses came out to explain they had a "cancelectomy," as in the sedation case was cancelled because the patient ate this morning! That meant, I was in!!!! All we needed was to find the radiologist, Dr. Polacik and have him come talk to me. When Dr. P came out, he was questioning why we needed this test done, especially because Dr. Naqvi had also faxed over orders for a chest CT. We showed him our previous reports and started to explain the story of this crazy summer and how we got here. Even after seeing evidence of the previous studies, he was still inclined to back up Naqvi and has reservations about the findings. Until he looked down and noticed Stephen's AGGIE RING and that unspoken bond of the Aggie Network kicked in. We suddenly had an "in," which came in handy for the rest of the day.
I went back, changed, and waited. Finally, it was time for an IV----my least favorite thing! I specifically explain that I am a hard stick and that my veins seem like they are great, but roll. Some people think they are better than my personal experience with EVERY OTHER MEDICAL PROFESSIONAL that has screwed up an IV on me. He got it in....sort of....and dug around for about 4 minutes until he finally got it right.
The MRI was long, about 40 minutes for each test--without contrast and with contrast.
I was taken into the holding area and waited and waited for my next instructions.
The nurse went out to catch Stephen up, as he was waiting alone for over 2 hrs. with no news up to this point. She also came back and explained that we were trying to schedule whether to do the CT or the biopsy and if they were both necessary. She was waiting to hear from the Doctor, but couldn't find him. (He was actually out talking to Stephen. After reading the MRI, he had to hear the whole story of why I needed the original MRI and that it wasn't to discover cancer, but to identify fractures or the causes of my pain.) The nurse found him, but didn't want to interrupt, as he was meeting with another radiologist to discuss my case.
Doctor P. found me and explained that, YES, there was a definite need for a biopsy, and we were going to do a CT with and without contrast.
(By the way, I think I might have met my radiation limit for the year in the last 2 weeks!!!!)
I went around to the pre-op area, and Stephen was FINALLY able to come talk to me. It was after 2:00 o'clock by this time. {My original appointment was at 9:30.} They prepared me to go back, after checking with me about a million times to make sure I'm not pregnant!
The biopsy wasn't fun, but it wasn't terrible, especially with Versed and Fentanyl on board. Using and x-ray, the radiologist was able to give me local anesthesia and then take a needle to remove a sample from one of my lumbar vertebrae. It was quick and nearly painless.
I did well with recovery....(look how above average I am!!)....and we were able to get right back for the CT, with and without contrast.
Even though radiologists don't usually go over results, as they send reports to the referring physician, our Aggie friend basically told us he agreed that it was, after all, NOT ARTHRITIS, and that he hoped we would be able to get it under control. He told the pathologist to check for my breast cancer markers, giving them a heads up on what I have already been through. Hopefully, this will help us get a better idea of what we are dealing with.
Oh, yeah.....I also forgot to bring my phone with me today, thinking it would be no big deal, as we would be there and back again by early afternoon. Instead, I ate a yogurt at 6:00 a.m., and finally got some dinner in me again around 6:00 p.m. I also had about 100 texts and several phone calls and voice mails, including one from Dr. Naqvi's personal cell phone it looks like it is a significant disease in the bone, and he was really amazed because it was completely clean in March. His suspicion is that probably before we started, I probably had this in my blood. She's also concerned about radiation and in radiating the big area because it can affect chemotherapy later on.
After a long, LOOOONG day, I'm only somewhat closer to knowing the next step. I am grateful for being thorough on getting all the scans and tests to confirm this disease and diagnose it in order to fight it in the best way possible.
I guess I'll keep finding out more each day.
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