Friday, September 27, 2013

CrAzY 2013 so far, and second opinions!

A quick re-cap of the 8 months hiatus from my blog, its been a very emotional and challenging year to say the least! (this post might get ridiculously long)

In February my husband was dx'd with skin cancer. Initially the Dermatologist called it a Squamous Cell Carcinoma, which caused a major freak out on my part. Although when detected early, Squamous Cell Carcinomas "rarely" metastasize, it was still very scary to be dealing with the "C" word at all. Talk about a slap in the face, and a HUGE reminder of appreciating your health, life, and loved ones every single moment of every single day! After going through Mohs micrographic surgery, it just so turned out that the biopsy revealed it was "just" a Basal Cell Carcinoma, which is a much less serious cancer than the original assumption. With Mohs surgery, each layer of cancer containing skin is progressively removed and examined until only cancer-free tissue remains. We are skin cancer free!!

In March my Mom was really struggling with her health. Just not feeling well, also related to a very stressful situation in her life. One night she had several symptoms of a stroke, and ended up calling the paramedics. I showed up at her house within minutes, to find her already on oxygen and with paramedics questioning if she had ever had a panic attack.
WHAT? Seriously? That was her "diagnosis" according to them. But, we didn't feel comfortable with that, so we drove to the ER. It didn't take long for them to find that her potassium level was dangerously low. She spent 2 days in the hospital, and has been good since! ALWAYS trust your gut, and get a second opinion if you feel the need!!!

Also in March my Hannah began to struggle even more with her depression. She had quit playing competitive Volleyball earlier last year, and there was an obvious downward spiral since then. (I have struggled with depression since I was her age, please know it is a medical diagnosis!) Hannah didn't really mesh with her counselor (its hard to find good ones these days!)and one depression medication caused a rash so it had to be changed. The next one made her feel like a zombie, and one (presumably) caused her to black out. She fell and split her chin open requiring a couple stitches, which caused ME to question what the hell we are doing trying ant-depressants on a child!!??? Finally the next trial medication pushed her over the edge. She spent 6 days in the hospital. This is where *I* went downhill, mourning for my child. For her emotional struggles. The stress, unknowns, the side effects and fear of not treating the depression vs treating it WITH medications. Nothing could ever explain the feelings involved as a parent when your child hurts and there is nothing you can do to make it better. Especially when the cause is major depressive disorder, a chemical imbalance in the brain!! It has been an endless battle since then. Still to this day we haven't found a medication that is what SHE needs to get back on track. As a matter of fact, tonight she starts a new medication, and Im scared to death....yet hopeful. Medications are NOT always the answer, they are a small part of the puzzle. I feel guilty if we continue trying to find the right med, and I feel guilty if we quit trying. So, please don't judge!! This one last "trial" medication could be the missing link, or it could worsen symptoms. If it isn't for us, we are back at square one.

In April my husband lost his job, again. For the second time in just a few years. Not only can job loss be devastating financially, but when you MUST HAVE medical insurance, COBRA payments of $1200 a month on top of losing income is NOT GOOD. We are still recovering, having finally made our last COBRA payment in August! THANK GOODNESS!!!!

In May I started to feel quite yucky! It became a struggle to even make it through the day without needing a nap. Id nearly fall asleep all day long at work, and I'd sleep a few hours after work each day. All my labs were normal except my hormones were a bit off balance, but that's the life after hysterectomy I suppose! I was suffering from debilitating fatigue, muscle aches, mouth sores, flu like symptoms, major low back pain, tingling, eye pain, numbness. WEIRDNESS! My sugars had been running much higher too, but, I blamed it on stress, depression and hormones. I spent most of the summer months on the couch after work each day, just feeling like YUCK. What a waste of living!!

In June, Josh's Aunt was diagnosed with Glioblastoma, the most aggressive, deadly and malignant of all brain tumors. Prognosis is typically 3-15 months. So not fair when you are only in your 50's!!! A very long story short, Chemo and radiation after surgery left debilitating loss of speech, coordination, confusion etc. Another trip to the ER just a few weeks ago found the tumor was growing. She was transferred to Hospice care, but after a few days family decided to seek a second opinion to try and beat this damn cancer and enter a research study as a last resort. The second opinion said the tumor did in fact, NOT was just the brain swelling that caused the tumor to look larger. WHaaaaattttttt!!?? Need I say it again? ALWAYS GET A SECOND OPINION!!!!!!! So, last week during the pre-testing before entering research studies, they found DVT's in Auntie's legs, and then also in her lungs. Do you see how a second opinion actually may saved her from dying of a PE, likely a complication from the Cancer treatments? SECOND OPINIONS!!!! Right now Auntie is stabilized and doing amazing well considering!! Every day the brain is recovering from the radiation and swelling. Her speech, confusion, and coordination has majorly improved to near normal!!! It is still a long road ahead of uncertainties, but making every day count is what matters most right now!

In August I developed swollen lymph nodes and a "relapse" of even crazier symptoms! Many Neurological symptoms including facial numbness, left arm heaviness, left leg heaviness, chest pain, zapping sensations etc caused me to undergo 2 brain MRI's. No Multiple Sclerosis or Neurological diagnosis thank goodness!(Except my PCP thinks I have health anxiety, what a jerk) Abdominal pains required a CT scan, nothing there either. Doppler studies were all clear, and endless lab work says I'm not likely to be experiencing anything like Lupus or Fibromyalgia. (eye dryness, burning, light sensitivity!!) My PCP seems to believe I have some autoimmune disease causing all this nonsense. As of about 2 weeks ago I am FINALLY not having nearly as many crazy symptoms and Im feeling much better!!! I am still waiting to see a Rheumatologist to figure out my growing lymph nodes!!

So that's about it. All these mentions of my crazy year....what IS "NORMAL" life anyway? I guess this just is, isn't it?


Lora said...

Holy crap girl, they haven't put you in a straight jacket yet??!?!

Praying for good thing to come your way. (((HUGS)))

Our Diabetic Warrior said...

I am so sorry to hear about everything that you have been through in such a short period of time. I wanted to ask you if you've ever been tested for celiac disease? It's very common with diabetes and can cause some really strange symptoms. It seems to be different for everyone.