Hey all! Sorry it took me a little while to post an update, I had some other things come up and figured it would be easier to just do one slightly longer post. So anyway, here we go. The week after Thanksgiving, I woke up on Wed morning and noticed that I had a couple of swollen lymph nodes that were pretty tender. I normally don't have any issues with them, so I thought it was a little strange. I also had some pretty excruciating back pain that popped up a couple of days before that for no reason that I could think of. Anyway, I was due to go to the cancer center the following week for blood work, so I figured I'd mention the nodes then if they were still bothering me. I woke up Thursday morning to get ready for work and almost passed out when I walked across the room. I felt like complete shit, so I called in to work and went back to sleep after taking a double dose of my steroid. I slept until almost four in the afternoon. I felt absolutely horrible. I didn't do much else that day and was planning on trying to go to work Friday since I had gotten so much rest. Ha. I had good intentions at least... I woke up at around 3 or 4 am and knew I wasn't going to work. I was going to go in to the cancer center when they opened because I felt even worse. So I tossed and turned, and waited until they opened at 8 so I could call and see about going in. They told me to come right down, which I did... and thinking back I probably shouldn't have been driving, but I made it in one piece. I ended up seeing a NP that was new to me, and she was super nice. They started to get my vitals and my blood pressure was in the crapper (thanks adrenal insufficiency!), and apparently I had a 103 degree fever... which is a big no no, especially for a cancer patient (note to self, check temp more often!). With the fever and the swollen lymph nodes I was told that I was being sent over to the ER, and that they would do a CT scan and blood work to see if they could figure out what was going on.
So, on to the ER I went. They did blood work, and then blood cultures to check for sepsis, as well as give me bolus after bolus of fluids to try to raise my blood pressure. They apparently didn't believe me when I told them that fluids wouldn't make a difference and that I needed steroids to raise it. I had a scan of my pelvis done, and was told that since the blood cultures take at least 48 hours that I was going to be admitted. My parents were there by this time, and I was appreciative of the company, even though I felt horrible and was sleeping quite a bit. They told my parents they were taking me to room 250... so I was a bit surprised when they actually took me to ICU. Apparently my blood pressure was low enough that they thought I'd make the nurses on the main floor nervous, so they sent me there (I was running around 76/44). Turned out to be ok though because I LOVED my nurses in the ICU... especially the one I had on nights. She was amazing. And I actually talked with her quite a bit since ICU was on the slow side, and I wasn't sleeping at all by the first night. They had me on vancomycin and zosyn "just in case" I had sepsis. Plus they finally started me on stress doses of SoluCortef (hydrocortisone) to help with my BP. So I was getting 100mg of steroids every 6 hours for the first day... definitely no more sleep happening. Mom and dad took Dagen for the night so Chad could come and hang with me. Anyway, I won't bore you with all the details of my stay... I basically didn't sleep and did a lot of knitting. I was bummed because I had to pull out of a craft fair that I had set up for Saturday, but what can ya do. I ended up getting discharged on Sunday evening after my blood cultures came back negative. Yay for crazy doses of strong antibiotics I probably didn't need!
I woke up Monday morning feeling like complete crap again, with another fever and so many aches and pains from head to toe that I was convinced that I had a pulmonary embolism. Seriously though, I had every single symptom and freaked myself out. I had my dad come get me and take me back to the ER... and I was admitted again. This time I didn't have to go to the ICU since my BP was better. I had a repeat CT of my pelvis to check my lymph nodes (which had decreased in size and weren't as tender) and they did one of my chest to check for a PE (which I didn't have, thank goodness). My cultures were all still negative and they eventually got my fever under control. I was discharged on Tuesday. And after all that, no one can tell me exactly what happened. One doctor thought it was something viral (which is what I'm thinking also), another thought it was an adrenal crisis because my potassium levels were low (when in crisis they usually run high), and it obviously wasn't sepsis because everything bacterial came back negative. So yeah, that was fun... got pumped full of steroids and fluids and antibiotics, gained 10 lbs in 5 days and am sporting that awesome steroid moon face. Because of the hospital stays my appointment with the endocrinologist was moved up. That was a pretty straight forward appt since I already knew about the adrenal crap. The only thing I got was a script for a stress dose of SoluCortef. So basically, if I ever get the stomach bug, or get sick to the point where I can't hold down my steroid, I now have a vial of 100mg steroid and a needle so I can do an intramuscular injection into my thigh before I got to the ER. Awesome. Big needle too... big needle.
So, I'm sorry that this is turning out to be so long... but I'm coming up to today and that's where the new info is. On the CT scans I had in the hospital, there were apparently some other lymph nodes that were enlarged, so they decided to move up my PET scan (I wasn't supposed to have one until Jan or Feb) to this past Friday. I met with my NP at the cancer center and got my results today. So first off, there was absolutely nothing noted on the report about any activity in the anterior mediastinum, which is the area where the cancer always is. So, it looks like the Opdivo actually did finish clearing that up even after I stopped getting the infusions. Now for the downside... because it seems like with me there's always something else. There are now six (yes I said six) lymph nodes lighting up on my PET, as well as my spleen. There is also a spot on my right posterior upper iliac crest (hip bone) that is lighting up. That would explain the horrible pain I've been having over the last couple of weeks in my lower back and hip. So... big bummer, not the news I was hoping for by far. There is a small possibility that some of the nodes are lighting up because of the recent infection or whatever I was dealing with, but it's unlikely. Oh yeah, and apparently I also have a small hiatal hernia. That explains the upper abdominal cramping and pain I've been having for months. Anyway, the next step is another biopsy, of what will be up to the radiologist. Then I'm going to head down to the city to meet with a very well known and respected lymphoma specialist at Sloan Kettering and see what he recommends. So yeah, that's my update... was hoping for a good one since it's almost Christmas and what not, but what can ya do. It seems like every year I get my bad news regarding my cancer in Nov and Dec... so I think I'm just gonna start skipping those months, LOL. Anyway, positive thoughts, vibes and prayers appreciated. I'm just going to focus on having an amazing Christmas with my family, and I'll take all this other crap one day at a time. And of course I'll keep you all updated as I learn more. Have a wonderful holiday and happy new year!! XOXO
Wednesday, December 20, 2017
Tuesday, September 19, 2017
Scan Results
Hey all!! As some of you know, I had a PET scan done last week. I went in this morning to see my NP and get the results. I wasn't really looking forward to the appointment, because I've been having little "twinges" around my tumor site for the last two weeks or so... so I was kind of expecting my scan to light up like a Christmas tree. Well, apparently I was wrong... kind of. My scan report stated first off that the main mediastinal mass is primarily DORMANT. Say what?! The mass only had an SUV uptake that was less than 2. SUV uptake ideally should be under 2 or 3. I don't think I've ever seen the word dormant in one of my scan reports, lol. So, that was exciting! However, there was that little word "primarily" in there. So there are two very small sites that have slight activity. One measures 1.3mm and had an SUV uptake of 4.2, and the other measured 7mm and had an uptake of 3. At this point, were just going to keep an eye on things to see if the new spots continue to grow or increase in activity. The scan also showed some esophagitis, which was surprising because I've had no issues or symptoms to indicate a problem. My NP said it's most likely a side effect from the steroid that I'm on for the adrenal insufficiency. So, I get to add another another med, this one for acid reflux that I don't really have, lol. And I just have to say, I'm totally ok with the steroid for the time being because it's suppressing my immune system enough to start to get my alopecia under control, but not so much that my white blood cell count has been affected. So yay for a teensy, tiny bit of hair growth! LOL
Now on to the third thing we saw on the scan... apparently it's normal for your heart to light up on the scan (same for thyroid, kidneys, bladder, etc.) due to the metabolic activity. Well in my case, I had more uptake than normal in the left ventricle of my heart, which may indicate hypertrophy. Oh goody! So, Monday morning I will be getting an echocardiogram of my heart so we can get a closer look at things to make sure there's nothing funny going on. On another note, aside from my twinges, I feel great. I've got a ton of energy, I got cleared to return to work, and I can function like a normal human being, lol. Overall, I feel better than I have in years!! So hopefully the heart thing is just a little bump in the road. If the two slightly active spots continue to grow, I'll most likely look into starting treatment again. But I'll cross that bridge when I get to it! Thanks again to everyone for your positive thoughts, well wishes and prayers. I really appreciate it!!! I'll update again when I have my echo results. XOXO
-Briana
***Edited to add, my echo came back fine! Phew! :)
Now on to the third thing we saw on the scan... apparently it's normal for your heart to light up on the scan (same for thyroid, kidneys, bladder, etc.) due to the metabolic activity. Well in my case, I had more uptake than normal in the left ventricle of my heart, which may indicate hypertrophy. Oh goody! So, Monday morning I will be getting an echocardiogram of my heart so we can get a closer look at things to make sure there's nothing funny going on. On another note, aside from my twinges, I feel great. I've got a ton of energy, I got cleared to return to work, and I can function like a normal human being, lol. Overall, I feel better than I have in years!! So hopefully the heart thing is just a little bump in the road. If the two slightly active spots continue to grow, I'll most likely look into starting treatment again. But I'll cross that bridge when I get to it! Thanks again to everyone for your positive thoughts, well wishes and prayers. I really appreciate it!!! I'll update again when I have my echo results. XOXO
-Briana
***Edited to add, my echo came back fine! Phew! :)
Friday, August 11, 2017
I'm Still Here!! Part #2
Hey friends! So I wasn't as prompt as I had planned to be with writing the second half of this, but that's ok. I've calmed down a little (or maybe its the meds, lol) and hopefully won't bitch like a crazy woman, lol. If you've read my previous post (and if you haven't I'd suggest you do so you have some idea where I'm going here) then you may remember that even though my most recent CT scan looked good, that I had been feeling like crap for a while. I'm going to go into more detail about that, most likely because it's so fresh in my mind, and I need to get it out.
Thinking back, I want to say that it was in May when I started having issues with fatigue. I've always had fatigue along with treatment, but this was totally different. We'd been changing my synthroid dosage almost every month because my thyroid and TSH scores were so out of whack, and I think most of us just assumed it was my thyroid. I tried explaining it away to myself so I wouldn't get too worried, but there were a few different things going on with it. First of all, it reminded me of when I went through radiation. That was probably one of the most physically exhausting things to have done. I got to the point where I was sleeping whenever I could (kinda tough with a 3 year old, but I managed). I would sleep for 10 hours at night, wake up feeling ok, and then by the time I was 20 minutes into my hour commute to work, I would start nodding off while driving. That scared the crap out of me... it's a good way to get yourself or someone else killed. Some days were so bad that my co workers would ask me to text them when I got home so they knew I made it. I had one instance while I was on my lunch break, sitting in my car eating a sandwich, that I literally fell asleep trying to chew. Eventually, I just used my lunch break to sleep, and I pretty much stopped eating. It continued through the whole month, and then I started developing some joint pain. Both were listed as potential side effects of the Opdivo, so I just figured that's what it was.
In June, the whole downfall started to progress. I was so tired that the girls at work were trying to keep my schedule light... if someone cancelled first thing in the am they'd let me know, so I could sleep in longer. Same thing at the end of the day. When I was done, I got the hell out of there so I could go home and sleep. The other hygienist would shuffle her schedule around to try to help me out. I was pretty miserable. I was also starting to work for another office Per Diem, and I had scheduled a bunch of days to work through with them through the end of August. Some days were so bad I couldn't get out of bed. One of the things that made me mad, was that I had been planning to go visit some friends of mine that were playing a concert only a couple of hours away. I didn't go, because I had no confidence that I would be able to drive there and back without falling asleep. I stayed home from work on June 15, but I did make it for part of the day on the 16th. The night of the 16th was The Corning Painted Post Relay for Life. I try really hard to attend every year. This year Chad and Dagen came too. I wanted to show off my little guy, and I couldn't have done it by myself because by this point, I could only carry Dagen for very short periods of time, and I had a hard time getting him into his car seat on my own. Hell, I had a hard time walking across the parking lot to get into the school. As we were sitting there trying to eat, I started to get really nauseous. We didn't stay for the Survivor's lap (which bummed me out) because I knew there was no way I'd make it. On the way home I developed the worst migraine I've ever had. I could barely talk, was slurring my words talking to Chad, couldn't turn my head... it was horrible. I spent at least 4 hours in my head thinking about what description I was going to give to 911 when I had them come to get me, it was that bad. I eventually fell asleep. From that time on, things just started to spiral. I went home sick again from work on the 22nd, and went right to the cancer center for fluids and nausea meds. My BP that day was 80/59. Once I started thinking about the extreme fatigue, joint pain (that was getting worse), and the migraine with neck pain I had convinced myself I had Lyme Disease. I left work early the 23rd so I could go get blood drawn to check for it. None of the walk in clinics around did that, so I ended up at the ER. They ended up keeping me in the ER to give me fluids because of my low BP. They also stated that all this could possibly just be lingering side effects from the Opdivo. Another thing I hadn't touched on.... my low blood pressure. Not gonna lie... when I would check it at work and it was so low that I got an error message, it freaked me out. At this point, I started going to the cancer center regularly for fluids to try to help keep up my BP.
Once July started, I really began checking out. I had such profound fatigue and muscle weakness that I could barely do anything. I was basically on another planet watching the world go by. I did nothing around the house... I couldn't even walk across the room without getting short of breath. When that happened, I took my happy ass back to the ER. Maybe I had pneumonitis, or mild pneumonia... it had to be something! They did blood work (perfect) and chest x-rays (negative). Once again, must must be side effects of the Opdivo. My parents, who are retired thankfully, started picking Dagen up more frequently to play with him and get him out of the house so I could rest. And that's about all I did. The whole month of July consisted of me trying to go to work, and failing miserably damn near every time, and going to the cancer center for fluids every chance I got, and sleeping. Chad gets the dad of the year award because it was basically like he was a single parent for a couple of months. So I was surprised that when I had my regularly scheduled CT scan on the 20th, everything looked good, I figured there had to be something wrong since I still felt so bad, but no one could figure out what it was. I had to stay for fluids after getting my CT results because my BP was a whopping 76/56. I was pretty much told that I could come in for fluids whenever I needed them, and that when I returned on Aug 22, we would do some more in depth blood work to try to figure out why I was so tired. I was scheduled to have a T4 (more in depth thyroid test), and my cortisol levels checked. This is where I dropped the ball.... I should have said, why are we waiting 4 weeks? Can we just do it now? But, I didn't. On, a side note I took Chad to that appointment with me, and my new doctor was much less of an ass that time.... I think he was more prepared for my questions, lol. He wants me to look into CAR-T cell therapy, but I was more concerned about finding out what the hell was wrong with me. Even the week before this when I was at the cancer center after leaving work early again, I had lost 10 lbs in a month, my BP was 87/57 and after a liter of fluids it dropped to 77/52. I couldn't figure out why the doctor wasn't more concerned about that.
When I was at work the following week, I had such severe abdominal and back pain that I literally couldn't work. I left early and once again, went to the cancer center for fluids and my nurse convinced me that I should go to the ER when I was done so they could check me out. They all knew I had something going on.... it just seemed like a mystery. I had more blood work, CBC and CMP both "perfect". I also had an abdominal CT... that showed nothing apparently. So they eventually let me go, and after 2.5 liters of fluid that good old systolic came up to a whopping 92. Must be side effects of the good old Opdivo. The following morning, I had to attend a church mass for my Grandma Dooley that had passed away previously in the week. I'm happy I made it though that day even though I was exhausted. I had a lot of people telling me that I should get a second opinion, so that's what I did. I called a family friend (my whole family is in health care of some sort) and started describing some of my symptoms. About a minute into my tirade he told me that he thinks I need my cortisol levels checked, like yesterday, and that I am adrenal insufficient. I got everything straightened out with the cancer center to move up my blood work from Aug 22nd to Aug 3. I went in that morning after fasting and had blood work and fluids done. Luckily one of my coworkers offered to see my patients that day. When the NP came in with my results from my blood work to go over it with me, she said she wanted me to come back the following day, and I told her that I had to work. She looked at me and said, no you don't, we're pulling you out. My cortisol level was less than .2 (normal range is 4.5-22.7). The other blood test, the ACTH wasn't back yet. I was started on a very low dose steroid and was told I should notice a difference in 2 days. My ACTH was only .5, which is basically undetectable. So my understanding right now is that I have adrenal insufficiency and immune pituitary damage. I have no idea if it's temporary or permanent, but I sure am happy that we finally figured it out. SO as of right now, I'm back on short term disability... I really should have been off for the prior two months because I was completely worthless at work and ended up screwing up schedules at two offices, sorry guys!!
Since I've had a few days to process everything, and I've stopped focusing on the fact that I could have had an adrenal crisis and died before the blood work was ever done in the first place, I'm starting to chill out a bit. I'm understanding that it's a rare complication that I just happened to get. It's like one of those things that you learn about in school but is so rare, you'll most likely never see it. There are less than 200,000 cases diagnosed in the US in a year. Lucky me once again! It's also helping that I'm not constantly nauseous, fatigued, vomiting, losing weight, I can walk without getting short of breath. I'm almost strong enough to pick up my son (which I couldn't do for 2 months), I can get in and out of chairs and cars without help, I can go into a grocery store without being afraid that I'll pass out and make an ass out of myself. And I'm coming out of the depression that I didn't even realize I was in. I feel like The last two months were a complete blur or trying to work and failing, and getting sick constantly and sleeping. I have a PET scan scheduled for Sept, so I'll see then if the steroid I'm on is weakening my immune system enough for the cancer to start growing again.
So to wrap up my little novella here, lol.... I'm starting to recover. Could have killed me, but didn't. I'm extremely thankful that I was able to get that second opinion. I'm also extremely thankful to husband for being Mr mom for a while, my parents stepping up to help out, as well as my in-laws. I'm so sorry for any calls, messages, parties, weddings, concerts or anything else that I would have normally done and completely blew off. Sorry to my employers and co workers that must have gone crazy with the scheduling. But I'll get better. It helps knowing that I was right and that something was really wrong. If there's one thing I have to say, it's be your own advocate. You know your own body better than anyone. If you think something is wrong, keep pushing until you get answers.
If you are interested in learning more about adrenal inefficiency or adrenal crisis... use Dr Google, but be warned it scared the shit out of me.
Briana XOXOXO
Thinking back, I want to say that it was in May when I started having issues with fatigue. I've always had fatigue along with treatment, but this was totally different. We'd been changing my synthroid dosage almost every month because my thyroid and TSH scores were so out of whack, and I think most of us just assumed it was my thyroid. I tried explaining it away to myself so I wouldn't get too worried, but there were a few different things going on with it. First of all, it reminded me of when I went through radiation. That was probably one of the most physically exhausting things to have done. I got to the point where I was sleeping whenever I could (kinda tough with a 3 year old, but I managed). I would sleep for 10 hours at night, wake up feeling ok, and then by the time I was 20 minutes into my hour commute to work, I would start nodding off while driving. That scared the crap out of me... it's a good way to get yourself or someone else killed. Some days were so bad that my co workers would ask me to text them when I got home so they knew I made it. I had one instance while I was on my lunch break, sitting in my car eating a sandwich, that I literally fell asleep trying to chew. Eventually, I just used my lunch break to sleep, and I pretty much stopped eating. It continued through the whole month, and then I started developing some joint pain. Both were listed as potential side effects of the Opdivo, so I just figured that's what it was.
In June, the whole downfall started to progress. I was so tired that the girls at work were trying to keep my schedule light... if someone cancelled first thing in the am they'd let me know, so I could sleep in longer. Same thing at the end of the day. When I was done, I got the hell out of there so I could go home and sleep. The other hygienist would shuffle her schedule around to try to help me out. I was pretty miserable. I was also starting to work for another office Per Diem, and I had scheduled a bunch of days to work through with them through the end of August. Some days were so bad I couldn't get out of bed. One of the things that made me mad, was that I had been planning to go visit some friends of mine that were playing a concert only a couple of hours away. I didn't go, because I had no confidence that I would be able to drive there and back without falling asleep. I stayed home from work on June 15, but I did make it for part of the day on the 16th. The night of the 16th was The Corning Painted Post Relay for Life. I try really hard to attend every year. This year Chad and Dagen came too. I wanted to show off my little guy, and I couldn't have done it by myself because by this point, I could only carry Dagen for very short periods of time, and I had a hard time getting him into his car seat on my own. Hell, I had a hard time walking across the parking lot to get into the school. As we were sitting there trying to eat, I started to get really nauseous. We didn't stay for the Survivor's lap (which bummed me out) because I knew there was no way I'd make it. On the way home I developed the worst migraine I've ever had. I could barely talk, was slurring my words talking to Chad, couldn't turn my head... it was horrible. I spent at least 4 hours in my head thinking about what description I was going to give to 911 when I had them come to get me, it was that bad. I eventually fell asleep. From that time on, things just started to spiral. I went home sick again from work on the 22nd, and went right to the cancer center for fluids and nausea meds. My BP that day was 80/59. Once I started thinking about the extreme fatigue, joint pain (that was getting worse), and the migraine with neck pain I had convinced myself I had Lyme Disease. I left work early the 23rd so I could go get blood drawn to check for it. None of the walk in clinics around did that, so I ended up at the ER. They ended up keeping me in the ER to give me fluids because of my low BP. They also stated that all this could possibly just be lingering side effects from the Opdivo. Another thing I hadn't touched on.... my low blood pressure. Not gonna lie... when I would check it at work and it was so low that I got an error message, it freaked me out. At this point, I started going to the cancer center regularly for fluids to try to help keep up my BP.
Once July started, I really began checking out. I had such profound fatigue and muscle weakness that I could barely do anything. I was basically on another planet watching the world go by. I did nothing around the house... I couldn't even walk across the room without getting short of breath. When that happened, I took my happy ass back to the ER. Maybe I had pneumonitis, or mild pneumonia... it had to be something! They did blood work (perfect) and chest x-rays (negative). Once again, must must be side effects of the Opdivo. My parents, who are retired thankfully, started picking Dagen up more frequently to play with him and get him out of the house so I could rest. And that's about all I did. The whole month of July consisted of me trying to go to work, and failing miserably damn near every time, and going to the cancer center for fluids every chance I got, and sleeping. Chad gets the dad of the year award because it was basically like he was a single parent for a couple of months. So I was surprised that when I had my regularly scheduled CT scan on the 20th, everything looked good, I figured there had to be something wrong since I still felt so bad, but no one could figure out what it was. I had to stay for fluids after getting my CT results because my BP was a whopping 76/56. I was pretty much told that I could come in for fluids whenever I needed them, and that when I returned on Aug 22, we would do some more in depth blood work to try to figure out why I was so tired. I was scheduled to have a T4 (more in depth thyroid test), and my cortisol levels checked. This is where I dropped the ball.... I should have said, why are we waiting 4 weeks? Can we just do it now? But, I didn't. On, a side note I took Chad to that appointment with me, and my new doctor was much less of an ass that time.... I think he was more prepared for my questions, lol. He wants me to look into CAR-T cell therapy, but I was more concerned about finding out what the hell was wrong with me. Even the week before this when I was at the cancer center after leaving work early again, I had lost 10 lbs in a month, my BP was 87/57 and after a liter of fluids it dropped to 77/52. I couldn't figure out why the doctor wasn't more concerned about that.
When I was at work the following week, I had such severe abdominal and back pain that I literally couldn't work. I left early and once again, went to the cancer center for fluids and my nurse convinced me that I should go to the ER when I was done so they could check me out. They all knew I had something going on.... it just seemed like a mystery. I had more blood work, CBC and CMP both "perfect". I also had an abdominal CT... that showed nothing apparently. So they eventually let me go, and after 2.5 liters of fluid that good old systolic came up to a whopping 92. Must be side effects of the good old Opdivo. The following morning, I had to attend a church mass for my Grandma Dooley that had passed away previously in the week. I'm happy I made it though that day even though I was exhausted. I had a lot of people telling me that I should get a second opinion, so that's what I did. I called a family friend (my whole family is in health care of some sort) and started describing some of my symptoms. About a minute into my tirade he told me that he thinks I need my cortisol levels checked, like yesterday, and that I am adrenal insufficient. I got everything straightened out with the cancer center to move up my blood work from Aug 22nd to Aug 3. I went in that morning after fasting and had blood work and fluids done. Luckily one of my coworkers offered to see my patients that day. When the NP came in with my results from my blood work to go over it with me, she said she wanted me to come back the following day, and I told her that I had to work. She looked at me and said, no you don't, we're pulling you out. My cortisol level was less than .2 (normal range is 4.5-22.7). The other blood test, the ACTH wasn't back yet. I was started on a very low dose steroid and was told I should notice a difference in 2 days. My ACTH was only .5, which is basically undetectable. So my understanding right now is that I have adrenal insufficiency and immune pituitary damage. I have no idea if it's temporary or permanent, but I sure am happy that we finally figured it out. SO as of right now, I'm back on short term disability... I really should have been off for the prior two months because I was completely worthless at work and ended up screwing up schedules at two offices, sorry guys!!
Since I've had a few days to process everything, and I've stopped focusing on the fact that I could have had an adrenal crisis and died before the blood work was ever done in the first place, I'm starting to chill out a bit. I'm understanding that it's a rare complication that I just happened to get. It's like one of those things that you learn about in school but is so rare, you'll most likely never see it. There are less than 200,000 cases diagnosed in the US in a year. Lucky me once again! It's also helping that I'm not constantly nauseous, fatigued, vomiting, losing weight, I can walk without getting short of breath. I'm almost strong enough to pick up my son (which I couldn't do for 2 months), I can get in and out of chairs and cars without help, I can go into a grocery store without being afraid that I'll pass out and make an ass out of myself. And I'm coming out of the depression that I didn't even realize I was in. I feel like The last two months were a complete blur or trying to work and failing, and getting sick constantly and sleeping. I have a PET scan scheduled for Sept, so I'll see then if the steroid I'm on is weakening my immune system enough for the cancer to start growing again.
So to wrap up my little novella here, lol.... I'm starting to recover. Could have killed me, but didn't. I'm extremely thankful that I was able to get that second opinion. I'm also extremely thankful to husband for being Mr mom for a while, my parents stepping up to help out, as well as my in-laws. I'm so sorry for any calls, messages, parties, weddings, concerts or anything else that I would have normally done and completely blew off. Sorry to my employers and co workers that must have gone crazy with the scheduling. But I'll get better. It helps knowing that I was right and that something was really wrong. If there's one thing I have to say, it's be your own advocate. You know your own body better than anyone. If you think something is wrong, keep pushing until you get answers.
If you are interested in learning more about adrenal inefficiency or adrenal crisis... use Dr Google, but be warned it scared the shit out of me.
Briana XOXOXO
Monday, August 7, 2017
I'm still here!! Update Part 1
Hey all!! First off, I am so, so sorry that I haven't updated since November. November!! That's crazy! I'll try my best to rewind my mind to December and go on from there... hopefully it'll be somewhat brief. I had a CT scan done right before Christmas and the results were slightly different than my previous one. The main mediastinal mass hadn't changed much, but I had two new spots... one on each upper lobe of my lungs. My doctor wasn't concerned about them, so I decided not to be either. We also decided to push my scans a little farther apart to reduce my exposure to radiation. I continued on with the Opdivo with little to no side effects, which was pretty great. I believe it was in February sometime when I saw my doctor again and he informed me that he was leaving the cancer center, and that it was not his choice. To say that I was bummed and pissed off would be a pretty big understatement. He was the one that I started this whole ride with almost five years ago, and I didn't want to transfer care to someone else. But, of course, I had no choice. So thanks to whoever made that decision, or whatever hospital politics dictated it, you suck. I at least got to keep him until April, right before my next scan. I bought him a card and a few smartass gifts because I knew he was bummed, and I wanted him to know how much I appreciated everything he's done for my family and I.
So, right after he left I had another CT scan. When I went in for treatment and to have it reviewed with me I got a little more nervous because the spot on the upper lobe of my left lung had increased. It was considered to be a partial response to treatment at that point. The radiologist that read it said it didn't look "neoplastic" in nature, so I took that as a good sign and tried to brush it off. I also read some subsequent articles online about "pseudo-progression" while on Opdivo that made me feel better. So on we went, continued treatment every two weeks with plans to stop once I hit a year in June, (oh yeah, and no new oncologist until May). Honestly that wan't too bad, I love all the ladies at the cancer center... I just missed my doctor. And I'll take this opportunity to mention that I also FINALLY re-certified my EMT license during all this crap! :)
On to May... and I'm going to try to be nice in my next little section here... I met my new doctor. Overall he seems like he's a pretty nice guy, seemed happy to be there, very friendly and all that. But I don't think he was prepared for me, LOL. He started talking about an allogeneic (from a donor) stem cell transplant and clinical trials right off the bat because I'm "so young". When I said it was a last resort, I don't think it was the answer he was looking for. He asked my reasons why, so I told him specifically about the studies I've read and the increased risks for Graft Versus Host Disease when having an allo transplant after being on Opdivo, not to mention that I felt good at the time, so why would I want to subject myself to that hell again for a 30% cure rate? I asked about switching from Opdivo to Keytruda (another immunotherapy) and he didn't have an answer for me. He wanted to know what my background was. HA!! I wasn't being an asshole either, I was just asking specific questions that I would have asked my previous doctor, and he wasn't ready for me. He just got more condescending as the appointment went on. But I digress... I finished treatment on June 27th, and got to ring the little bell and all signifying the end of my treatment and was set up for a CT scan on July 20th. By that point I had been feeling like complete shit for a while (I'll get into it in the second half of my update). Went in to have my scan read and the spots on my lungs were gone! YAY!! My scan looked stable for the first time in ages. But by then I knew there was something else wrong.
I'll forewarn anyone that is going to read the second half of my update (which I will hopefully have up in a couple of days, not months! lol) that I'm going to RANT. I'm not naming any names, I'm not going to acknowledge any comments asking for specifics, if you're that curious you can message me and I'll do my best to answer questions. And I'm going to swear, possibly a lot. So... for anyone offended by that, you've been warned!! This is my therapy, and I need to get it out for my own mental health. LOL
Thanks again to everyone for all your prayers, positive thoughts and vibes, I really appreciate it!!! So much for this being breif! :) XOXO
So, right after he left I had another CT scan. When I went in for treatment and to have it reviewed with me I got a little more nervous because the spot on the upper lobe of my left lung had increased. It was considered to be a partial response to treatment at that point. The radiologist that read it said it didn't look "neoplastic" in nature, so I took that as a good sign and tried to brush it off. I also read some subsequent articles online about "pseudo-progression" while on Opdivo that made me feel better. So on we went, continued treatment every two weeks with plans to stop once I hit a year in June, (oh yeah, and no new oncologist until May). Honestly that wan't too bad, I love all the ladies at the cancer center... I just missed my doctor. And I'll take this opportunity to mention that I also FINALLY re-certified my EMT license during all this crap! :)
On to May... and I'm going to try to be nice in my next little section here... I met my new doctor. Overall he seems like he's a pretty nice guy, seemed happy to be there, very friendly and all that. But I don't think he was prepared for me, LOL. He started talking about an allogeneic (from a donor) stem cell transplant and clinical trials right off the bat because I'm "so young". When I said it was a last resort, I don't think it was the answer he was looking for. He asked my reasons why, so I told him specifically about the studies I've read and the increased risks for Graft Versus Host Disease when having an allo transplant after being on Opdivo, not to mention that I felt good at the time, so why would I want to subject myself to that hell again for a 30% cure rate? I asked about switching from Opdivo to Keytruda (another immunotherapy) and he didn't have an answer for me. He wanted to know what my background was. HA!! I wasn't being an asshole either, I was just asking specific questions that I would have asked my previous doctor, and he wasn't ready for me. He just got more condescending as the appointment went on. But I digress... I finished treatment on June 27th, and got to ring the little bell and all signifying the end of my treatment and was set up for a CT scan on July 20th. By that point I had been feeling like complete shit for a while (I'll get into it in the second half of my update). Went in to have my scan read and the spots on my lungs were gone! YAY!! My scan looked stable for the first time in ages. But by then I knew there was something else wrong.
I'll forewarn anyone that is going to read the second half of my update (which I will hopefully have up in a couple of days, not months! lol) that I'm going to RANT. I'm not naming any names, I'm not going to acknowledge any comments asking for specifics, if you're that curious you can message me and I'll do my best to answer questions. And I'm going to swear, possibly a lot. So... for anyone offended by that, you've been warned!! This is my therapy, and I need to get it out for my own mental health. LOL
Thanks again to everyone for all your prayers, positive thoughts and vibes, I really appreciate it!!! So much for this being breif! :) XOXO
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