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