A Fork In The Road. Again. -- Health Update

I am sure you all have been wondering where I've been recently. Honestly, I've just been too exhausted and somewhat defeated to write a post. The last few weeks my health crumbled around me little by little and I shut down from the world a bit. After my hell of an ER visit the night of my last chemo, during which I got a concussion from passing out over the side of the bed that did not have rails up, my body went into full flare up mode. This means my illnesses went into overdrive and attacked my systems because they didn't know how to deal with the stress of a concussion along with chemotherapy symptoms.

My vasculitis purpura lesions.

Though I often post about Systemic Sclerosis it is unfortunately not the only serious illness that plagues my body. I have a disease called Leukocytoclastic Vasculitis that very infrequently rears its ugly head. Well, last week it decided it was time to bring some misery into my life, which kept me home bound for a while. Vasculitis is the inflammation of blood vessels so serve it causes them to become necrotic and leak, forming excruciating lesions called Purpura. In my case the purpura always manifest on my lower calves, making walking nearly impossible due to pain. I honestly have no idea how to describe the pain of these lesions -- the closest description would be to imagine the worst bug bite you have ever had, now pretend it was 1000 of them in one spot, then pretend it goes deep into your tissue causing internal bleeding -- but nothing actually bit you. Sounds great right? There really isn't anything you can do besides take steroids to reduce inflammation, though severe cases require Cytoxan treatments, which I already do. Basically my body just hates me and decides that no matter what toxin I throw at it, it still will cause destruction of my major organs. So yeah, that was an adventure. The lesions typically last one-four weeks, then dissipate. I upped my Prednisone for a few days and the pain and swelling seemed to subside a bit, so I am mobile once again, thank goodness!

I had an MRI last week to take a closer look at my cervical spine due to some decreased sensation in my extremities. I have yet to go over the results with my physician but, from the report I read it all looked pretty straight forward. Between C5-C6 I have moderate Degenerative Disc Disease with obvious damage, as well as straightening of the cervical lordosis. These changes could be due to 16 years of gymnastics injuries, but I guess I will never know! lol I am pretty sure my last MRI of the cervical spine showed something similar. For these reasons I don't believe that is what's leading to the numbness and tingling in my extremities, but I will find out more once I see my doctor next month for a follow up.

Today I had an Echocardiogram (heart ultrasound) preformed to rule out causes of my shortness of breath, chest pain, and irregular heart beats. My echo had actually improved in a few areas, but declined in a few too. It seems the Cytoxan helped my heart! Woohoo! My Ejection Fraction increased by about ten percent, my pulmonary pressures lowered, and a few of my valve regurgitations improved. I was extremely happy to see the results of this drug improving another vital organ. The only worse off results seemed to be the size of my right chamber, and a slightly prolapsed valve. For some reason my right chamber increased in size, which I am guessing was from the stress of my lungs declining so rapidly last year. It wasn't a huge increase, so nothing to worry about now thankfully. I am not sure why I suddenly have a prolapsed valve, but I will be talking to my physician about it when we follow up next month.

Last but not least, I got some big news from my Scleroderma Specialist through a phone call yesterday -- you know something is up when they call you at home. Unfortunately my CBC (complete blood count) has been very off the last two months. It seems my bone marrow cant keep up with Cytoxan and is failing to produce my white blood cells and platelets. My poor lab results had giant 'L's next to just about everything, Typically your counts bounces back about three weeks after chemo, but my bone marrow just isn't holding up like it should. Due to this my body is not produce very important white blood cells called Neutrophils which specifically fight bacteria. This is actually a separate condition called Neutropenia and can be very dangerous. It leaves me extremely susceptible to infection, even from my own "healthy" bacteria! Technically someone that is Neutropenic should not be around children, animals, public places, or the elderly -- basically just sit in a sanitary bubble with a mask on.
So now the big news: since my counts aren't returning to normal between chemo rounds I am being taken off Cytoxan. I am devastated, and happy at the same time. Typically when a chemo patient goes through low WBC the physician has them restart at a lower dose, but we have already done that once and my WBC count still can't keep up, proving the Cytoxan is damaging my bone marrow at unhealthy levels. Hopefully we can find a comparable medicine, though Cytoxan is the top treatment options besides a full blown Stem Cell Transplant. I am currently unsure what the future holds, but trust my specialist and know he will have a plan when I see him next month. Hopefully my body will hold out till then.