Crying Over Spilled Milk

  
The second half of 2014 was the biggest challenge I've faced so far.  My health, appearance, mind, and body underwent drastic changes.  I was depressed.  I was in pain.  I was terrified.  Mayo failed to deliver on it’s promise to fix me.  Some of the cancer was removed but not all of it.  For no reason they resected my spleen during surgery - which is serious given I work around children all day and it is an infection fighting organ.  Following my surgery in January of 2014, the remaining liver tumors grew while I was busy living.  I only had to go to the hospital once a month for my Octreotide injection (the only treatment option I was given) and I rarely saw a doctor.  It was great!  Hospitals are for sick people and that’s not me.  I was living the life of an active, thirty-something.  Everything fell apart at the end of summer when my blood work and scans showed it was time to act and act fast.  Reality slapped me in the face and I returned to research mode finding Octreotide is used to treat symptoms, not inhibit tumor growth.  For about 8 months nothing was done to restrain the liver tumors and things were getting out of control. 

My oncologist recommended chemo medication and I tried it in August and September. Whist enjoying the lovely antics of this bodily poison, one must have strict supervision - including weekly blood work.  During the second, two-week attempt at these pills (my first time ended, at my discretion, after one week), I received my follow-up-to-blood-work phone call and was told to STOP taking the chemo immediately.  My red blood count looked so bad they were very concerned.  I was asked if I had fallen anytime recently or if I had large bruises.  No.  Little did they know I'd already thrown those pills in the trash.  I wasn’t having the symptoms they asked about but plenty of others.  I was in so much pain and having crazy side-effects.  My body told me this treatment was not right for me.  I knew something was wrong and I wouldn’t take any more chemo until figuring out what it was.  I imagine it’s easier to launch a rocket into space than it was for me to get the help I needed.  

It took me about four months to uncover what was wrong.  No one offered me much help as I described my symptoms to multiple doctors on multiple occasions.  Symptoms were chalked up to chemo side-effects or I was told nothing is wrong after tests revealed the results were not “clinically out of normal range.”  This doesn't mean anything.  Many of the results were really low or really high - but not out of “normal” range by just the smallest bit.  Something WAS wrong.  I was life-raft floating in open water with sharks swarming.  I have never been so scared.  

Around November I diagnosed myself with a condition called Cushing’s -  extremely elevated cortisol levels persisting over time.  Cortisol is the stress hormone.  I found a wonderful, female endocrinologist who agreed with me and said my tumors are most likely the culprits.  There is no cure or treatment for Cushing’s.  The best they can do is offer you a pill which limits the amount of cortisol your adrenal glands produce.  However, this is not the cause of my Cushing’s and I found out this drug is no longer used in Europe because of its risky side-effects.  I was also the victim of untreated low potassium.  Both ailments are harrowing and cause distressing and agonizing symptoms.  

Cushing’s changed my life.  I quickly gained 20 pounds.  Not in a normal, gain-20-pounds way.  Cushing’s causes fat deposits in areas around the body.  I can’t tilt my head all the way back or lift my arms fully due to the fat deposits around my neck and shoulders.  There is a large ring around my waist resembling a swimming pool floatation device.  My legs swell and stiffen to the point of pain, making walking difficult to near impossible.  I have chronic fatigue and irritability.  Hair grew on my face and back.  While unwanted hair multiplied everywhere it shouldn’t be, the hair on my head fell out.  With this drastic thinning of my hair, I desperately sought solutions.  Shampoos, treatments, egg yoke concoctions… All I could do is cut it.  (Sad face.)  And then cut it again.  (Extremely sad face.)  I think short hair is super cute and fun.  But not if you don’t want short hair.  Fat deposits appeared on my face.  I don’t look like myself anymore.  These changes were a hard blow and they left me traumatized.  Over that 5 month time period, I became a different person.  

Perhaps worst of all was the difficulty thinking.  The combination of Cushing’s and low potassium created a fog I lived in for weeks and weeks.  I could power through work to “fade away” around 6 pm.  All I could do was go to sleep.  I couldn’t read.  I couldn’t write.  I wasn’t myself in those days.  It was difficult to hold conversations and concentrate.  My already poor memory faded even further.  With my body shutting down and my brain shutting off, I was in a state of terror.  Thoughts of death constantly crept about my mind.  I was being terrorized by the end.  

Then 2015 began and with it came some wonderful alterations.  I had a special “someone” in my life and it seemed my health was improving.  I felt better.  Alas…

Everything changed.  

The transformation in my appearance is most detrimental.  I'm shocked thinking about the last 9 months of my life.  I’m just barely starting to process what has happened/is happening.  It is an odd, indescribable feeling to catch your reflection in a window or your friend’s sunglasses and not see yourself looking back.  My vanity is Indiana-Jones-on-a-run-away-train out of check.  I’m awful.  I know everyone changes over time and we age.  I get that.  How I would love to just grow old and watch my wrinkles set in.  My changes came on fast and furious.  With all the craziness of these syndromes, I’ve gone from glittering creature of the night to mangy werewolf.  (That was a Twilight reference.)  I know the guys of the werewolf pack are attractive but I don’t know what they say about the women.  In my case, it’s the opposite.  As I mentioned, part of Cushing’s is Hirsutism, the growth of hair in women.  The picture of this on wikipeida is hilarious and gives an alternative name for this affliction: werewolf syndrome.  There is also mention of the bearded lady.  I’ve unwillingly become a member of the Freak Show.  My skin has changed, what used to be normal, human skin is now bumpy, course, and oily.  My face doesn’t look like me.  It’s swollen and puffy.  My signature long, blonde hair no longer exists.  There are fatty deposits all over my body.  I don’t even have a normal, female shape.  I am wretched for being so vein.  My looks agitate and frustrate me and then I'm furious at myself for caring so much.  I get depressed.  It's a sick cycle.  I'm trying so hard to accept how I look now.  I know I’m not the first cancer patient to deal with a changed appearance.  I know this.  So again, I’m mad at myself for thinking in this way.  

I’ve discovered I get to add to my already full plate carcinoid syndrome.  I’m experiencing symptoms such as peripheral edema: swelling in my belly/back, shoulders, face, legs and ankles.  (Yes, more swelling in my face).  As well as trouble breathing and arthritis in my knees to the point where it’s painful to stand and walk.  I’m back to full on research mode.  I’m trying to figure out what is causing what, how I can make it better, what do I do.  This is nightmare.  Literally a nightmare.  It’s all phone calls and then return phone calls to all kinds of doctors who handle each different thing.  Misery in the interim while I await test results and appointments.  The only treatment I could find is Octreotide - a medication I’d previously stopped because of my concern over it’s side effects.  I had to decide if I wanted to deal with a low functioning thyroid or the symptoms it treats.  I don’t know.  I guess the latter?  

The University of Colorado Hospital continues to make it up to me after their original botched attempt.  I’ve had two SIRT procedures where radiation beads were placed in my liver.  Four weeks later I had a scan and low and behold the doctors at UCH called me.  Normally I’m the one reading the radiology report and trying to get in touch with someone about what I should do next.  Not only did they call but they had a recommendation for another treatment because there is one little buggar who is not playing nice.  One tumor grew so we’re going back in to block the blood supply.  Almost done.  Cut this guy’s supply, let the other tumors continue to shrink, and then it’s back to normal.  Right?  I’m so over this.  So done with it all.  I just want my life back.  

I don’t even have normal hospital visits anymore.  I went to check in with my endocrinologist and during the first part of the visit where they check your vitals - blood pressure, temperature, etc - I had a heart rate of 38.  So, after meeting with my endocrinologist, I was sent to my general doctor for an EKG.  My blood pressure and heart rate were checked about more 30 times - each time the results were the same - low heart rate and high blood pressure.  I’ve had excellent blood pressure my entire life until about two months ago.  Now it’s high.  One more thing… The EKG looked normal but they didn’t want to send me away with heart rate around 40.  So, it was off to cardiology to be fitted with a 24-hour heart monitor.  One more thing…  When does it end? 

Typically I conclude these posts with some positive outlook and feel much better having sent the post out into the world.  I’m not sure how to do that this time.  Things are not good and I’m not fake.  I’m trapped in a constant state of symptoms, misery, depression, anxiety, and panic.  My life is continuously interrupted by hospital visits.  This cancer is rare and no one knows what to do.  My stress is endless, which doesn’t help my already high levels of cortisol.  My heart plummets every time I look in the mirror and don’t see myself looking back.  Everyday I wake up and try to choose happiness.  I’m currently hovering around 30% success rate if I’m lucky.  I’m struggling.  The “someone” is gone…  Dark thoughts keep creeping up on me.  Am I just to suffer for __insert time frame here__ and then die?  Medical bills are coming in by the ten of thousands of dollars, I don’t have the money to travel as I want to, I’m not married or in a relationship, I don’t have children.  My friends will be fine - they have beautiful lives full of jovial moments.  My family will tell all their favorite crazy Lindsey moments and laugh - hopefully.  We can be pretty ruthless with each other but maybe most of my unfavorable characteristics will be forgotten.    

What do I do now?  I just don’t know.