Wednesday, July 29, 2009
Brain Metastatis Scare
The weekend after my last post I was really sick. My migraine developed a new symptom: every time I moved my eyes around I had a flash of white light and pain in my head. I also had a fever of 102 with chills. On Monday I called my GP for an appointment but they told me to go to the ER instead. I spent 7 hours at the ER. They put me on IV fluids and gave me morphine for the head pain. The ER doctor told us he was afraid it could be a breast cancer recurrence in my brain, and he didn't want me to leave til I had a brain MRI. He also went on to say that if it was brain mets, they would check me into the hospital that night. Miles and I spent the next few hours waiting and thinking there was a good chance I now had Stage IV cancer... that was a lot of fun. But I finally got the MRI and it was normal!!!!!! The ER sent me home with a prescription for Percocet and that was that.
Thursday, July 16, 2009
Difficulties
It's 4:40 am and I'm up because I had a caffeine-induced panic attack and couldn't sleep. I took Excedrin+caffeine twice today for a migraine, and didn't consider beforehand that I'm 15 pounds lighter and haven't drank caffeine in months. It obliterated my migraine pain, but made me terribly dizzy and made me freak out.
I've had a difficult many weeks. My abdominal pain started on June 9. It's July 15 and I've had no relief. I've seen my oncologist twice, two GPs, a gastroenterologist, an acupuncturist, and a naturopath. I've done all kinds of tests: blood test, urine test, abdominal ultrasound, an endo/colonoscopy, and right now I'm finishing up poo samples so they can test for parasites. It's been suggested that the pain is anything from gastritis to excess bile to gallbladder disease to post-chemo damage to hypersensitivity reaction. Every doctor has their own opinion, and every doctor says something different. Through trial and error, I've finally found some relatively nutritious things that my stomach can hack, and I limit myself to those things. I'm gonna start some vitamins and supplements suggested by the naturopath to help build up my digestive system. Crossing my fingers...
The last few weeks were full of disappointment with doctors and feelings of being neglected. It culminated this week in a cancer scare...
I've wanted to switch oncologists for a while, especially being post-treatment and now depending on follow-up care for the rest of my life. My current oncologist gives me no guidance at all. For example, when he referred me to a GI doctor for my abdominal pain, he literally said "I'm happy to wash my hands of this..." [insert hand-wiping motion here].
I recently got copies of my records from his office. I saw a letter in my file from my 2nd opinion oncologist to my 2nd opinion surgeon. In the letter from 7 months ago she wrote: "Of note, the bilateral MRI of October 2, 2008, showed a right sided lesion of 1.3 x 2 x 1.8 cm ... an MRI suggesting an unclear abnormality on the right side which will require further follow up ... The right breast should be followed by MRI and mammogram in 3 to 6 months by her local physician."
What!!!! No one ever mentioned something abnormal on my right side, and I haven't had any follow-up!
The puzzling thing was she mentioned my October 2nd MRI ... yet, my MRI was on October 16th. I immediately hoped she'd made an error, but it seemed weird that she mentioned the abnormality multiple times in the letter.
I contacted my onc who didn't even know I'd had an MRI. My surgeon was supposed to have forwarded my whole file. So I contacted my surgeon, and though he told me early on that he reviewed my MRI images with his radiology department, my file didn't have any report or printouts confirming the right side was clean. He was also supposed to have received the original MRI report, but never followed up. So my onc called the hospital and they couldn't find my MRI in their system! Aaauugggh!!
To make a long story short... both my surgeon and onc finally got my original MRI report and confirmed my right side was clean. The 1.3 x 2 x 1.8 cm lesion the dumb other onc mentioned in the letter was the size of my left cancer. She must have been high when she dictated the letter talking all about my left side cancer and the right side abnormality.
Thank goodness I was on the side of her error that didn't affect my treatment. But it makes me wonder what other mistakes she's made that may have caused someone real grief, rather than just this awesome stress-induced migraine.
I've had a difficult many weeks. My abdominal pain started on June 9. It's July 15 and I've had no relief. I've seen my oncologist twice, two GPs, a gastroenterologist, an acupuncturist, and a naturopath. I've done all kinds of tests: blood test, urine test, abdominal ultrasound, an endo/colonoscopy, and right now I'm finishing up poo samples so they can test for parasites. It's been suggested that the pain is anything from gastritis to excess bile to gallbladder disease to post-chemo damage to hypersensitivity reaction. Every doctor has their own opinion, and every doctor says something different. Through trial and error, I've finally found some relatively nutritious things that my stomach can hack, and I limit myself to those things. I'm gonna start some vitamins and supplements suggested by the naturopath to help build up my digestive system. Crossing my fingers...
The last few weeks were full of disappointment with doctors and feelings of being neglected. It culminated this week in a cancer scare...
I've wanted to switch oncologists for a while, especially being post-treatment and now depending on follow-up care for the rest of my life. My current oncologist gives me no guidance at all. For example, when he referred me to a GI doctor for my abdominal pain, he literally said "I'm happy to wash my hands of this..." [insert hand-wiping motion here].
I recently got copies of my records from his office. I saw a letter in my file from my 2nd opinion oncologist to my 2nd opinion surgeon. In the letter from 7 months ago she wrote: "Of note, the bilateral MRI of October 2, 2008, showed a right sided lesion of 1.3 x 2 x 1.8 cm ... an MRI suggesting an unclear abnormality on the right side which will require further follow up ... The right breast should be followed by MRI and mammogram in 3 to 6 months by her local physician."
What!!!! No one ever mentioned something abnormal on my right side, and I haven't had any follow-up!
The puzzling thing was she mentioned my October 2nd MRI ... yet, my MRI was on October 16th. I immediately hoped she'd made an error, but it seemed weird that she mentioned the abnormality multiple times in the letter.
I contacted my onc who didn't even know I'd had an MRI. My surgeon was supposed to have forwarded my whole file. So I contacted my surgeon, and though he told me early on that he reviewed my MRI images with his radiology department, my file didn't have any report or printouts confirming the right side was clean. He was also supposed to have received the original MRI report, but never followed up. So my onc called the hospital and they couldn't find my MRI in their system! Aaauugggh!!
To make a long story short... both my surgeon and onc finally got my original MRI report and confirmed my right side was clean. The 1.3 x 2 x 1.8 cm lesion the dumb other onc mentioned in the letter was the size of my left cancer. She must have been high when she dictated the letter talking all about my left side cancer and the right side abnormality.
Thank goodness I was on the side of her error that didn't affect my treatment. But it makes me wonder what other mistakes she's made that may have caused someone real grief, rather than just this awesome stress-induced migraine.
Sunday, July 5, 2009
Poop Post
Monday I finally saw a Gastroenterologist. My abdominal pain stumped him, and he scheduled me quickly for an endoscopy/colonoscopy on Thursday. I took this stuff called Osmoprep the evening before to prep for the colonoscopy. I took 20 pills with 5 glasses of water in one hour, and then waited for the onslaught. I pooped 15 times that night!!! The next morning I took the remaining 12 pills with 3 glasses of water and the festivities continued.
On Thursday, I arrived at the Endoscopy Center and they prepped me with my IV. The doc sprayed some kind of anaesthetic in my throat and told me to swallow. It was the grossest-tasting liquid ever, and it instantly made my throat numb. It felt so weird, and I thought I couldn't breathe because I couldn't feel my throat. But two breaths later, I was already falling asleep from the sedation. I guess I woke up an hour later, but I don't remember anything -- not the doctor talking to me and Miles, not getting dressed, not leaving the Center, not stopping at Walgreen's, not telling Miles if the doc asked if I was mad at him for the Osmoprep. LOL. When I got home I passed out for four hours, and woke up with a sore throat. I discovered the doc had given us color printout pictures of my stomach and colon, that was pretty cool. Looks like I have erosive gastritis (inflammation of the stomach), possibly caused by bile reflux. He gave me some pills to take. I'm so thankful he didn't see anything worse, yet at the same time I'm thankful that he saw something so maybe I can finally get some relief...
On Thursday, I arrived at the Endoscopy Center and they prepped me with my IV. The doc sprayed some kind of anaesthetic in my throat and told me to swallow. It was the grossest-tasting liquid ever, and it instantly made my throat numb. It felt so weird, and I thought I couldn't breathe because I couldn't feel my throat. But two breaths later, I was already falling asleep from the sedation. I guess I woke up an hour later, but I don't remember anything -- not the doctor talking to me and Miles, not getting dressed, not leaving the Center, not stopping at Walgreen's, not telling Miles if the doc asked if I was mad at him for the Osmoprep. LOL. When I got home I passed out for four hours, and woke up with a sore throat. I discovered the doc had given us color printout pictures of my stomach and colon, that was pretty cool. Looks like I have erosive gastritis (inflammation of the stomach), possibly caused by bile reflux. He gave me some pills to take. I'm so thankful he didn't see anything worse, yet at the same time I'm thankful that he saw something so maybe I can finally get some relief...
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