Sorry my promises from my last post didn't come to fruition. It has been over a year since I have written anything in this blog. Some of it has been laziness. Especially from the time I wrote the last post until the beginning of July last year. After that, I do have a reason. I will try to explain.
At the end of June last year, Fiance, A, and I took a week-long trip to PA to visit Fiance's family. They still have a room set up much like he had growing up that we use when we go. Here at home, we have a king-sized bed that is fairly firm. The bed we sleep on in PA is much smaller, probably full size, and it is much much softer. I fell asleep with A in the bed at one point and woke up with a very stiff feeling neck. It was stiff for the rest of our trip and for a few days when we got home.
I didn't think anything of it. I have gotten a stiff neck before and it went away after a while. Unfortunately, this one didn't. My neck only felt stiff at first, and then after a few days it started to hurt some. That pain got a little worse and seemed to move down into my upper back and shoulders. It honestly felt like a muscle spasm so that is what I thought was wrong. After a few more days, the pain got worse. It got to the point where I couldn't sleep at night and no position I tried to lay in would work. Everything just hurt. Finally, it got so bad that I would just sit on the edge of the bed and sob.
I decided it was probably time to get it checked out. I went to the ER and told them I thought I slept funny and told them how bad the pain was. They sent me home with muscle relaxers and told me it was just a muscle spasm. A few days later, it hadn't gotten better so I went back. They said the same thing. Both times, no x-rays, no examination, no real questions at all. Just that it was a muscle spasm and that I needed to take the muscle relaxers.
Finally I got an appointment with my regular doctor. He sent me for x-rays and gave me more muscle relaxers. I got a call a few days later from him. He saw the spasms on the x-ray, but he also saw a cyst inside my spinal cord. He told me that he was going to refer me to a neurosurgeon to take a look at it.
Let me just say right now that I am so glad that I was referred to this particular neurosurgeon. He is extremely nice, explains things to me in ways that I will understand and actually makes sure I understand, makes me feel calm before surgeries, and doesn't pretend like he knows everything but will find out something with me if need be.
The neurosurgeon ordered an MRI of my cervical spine. It showed that I not only had a cyst in my spinal cord, but a small tumor. Yes. INSIDE my spinal cord. He ordered another MRI on my head because he saw something on my cervical spine MRI. There were two more tumors on my brain. One was on my brain stem and the other on the right, back side of my cerebellum. This concerned him. He asked if I had ever heard of Von-Hippel Lindau syndrome. I had not, but he said it is basically a genetic disease where tumors develop on the brain, in the spinal cord, possibly on the kidneys and pancreas, and possibly in the eyes and ears.
Since he suspected VHL, he ordered another MRI that would scan my thoracic spine. Luckily, my thoracic spine is clear of tumors.
I had surgery in September of 2013 to remove the tumor on my brain stem since it is the one that concerned him most. The surgery itself went great and he was very pleased with it. It turned out to be a hemangioblastoma, which he said is NOT cancer. It is just an exceptionally bloody tumor. I spent a day (and my birthday!) in the ICU because of the nature of the surgery. After that I spent a couple of days on the regular floor before I got to go home. The surgery left me with a scar running down the back of my head that still feels a little weird. Other than that, I have had some numbness in my left side, particularly my left leg, since the surgery but I have gotten used to it and it doesn't keep me from doing anything. The neurosurgeon thinks it is probably the tumor in my spinal cord pressing on something, but we won't know that for sure until he takes it out.
A few weeks after I came home, I started getting headaches. They got steadily worse and worse until I called the neurosurgeon. He did another MRI of my head and found fluid hanging out around my brain. The spinal fluid wasn't draining correctly so he decided to put a shunt in. So, in October I went in for another surgery to place a shunt. It is on the top left part of my head, with a tube running under the skin, behind my ear, and down into my abdomen. I recovered quickly from that surgery as well, but it hurt more because in addition to the incision he made on my scalp to place the shunt, there was also one on my stomach to position the tube.
Not even a week after that surgery, I noticed clear liquid draining from my stomach incision. It wasn't just normal drainage. It was constant. My shirt would be soaked after a while. He sent me for another MRI (yay more MRIs!) and it showed that the tube had coiled itself up. He went in again (!) to secure the tube. He just used the same stomach incision, which means the painful wound took longer to heal. I can't complain, though, because since then everything has been fine.
After the first surgery, my neurosurgeon referred me to an oncologist, just in case. He did some testing and ordered an MRI of my abdomen. They found tumors on both of my kidneys and some lesions on my pancreas. I was then referred to three more doctors. This time a urologist, an audiologist, and an optometrist. He wanted to check my eyes and ears for tumors, which came back clear. The urologist did some more tests and ordered a biopsy of the largest tumor on my left kidney in December of 2013.
It came back cancerous.
It has been a scary road since then. Cancer is such a terrifying word.
It is renal cell carcinoma, which isn't uncommon to find in patients with VHL. They are fairly sure the lesions on my pancreas are only cysts, which is good news. I wasn't too thrilled with the urologist, though. After he called me and told me they found cancer, I went in for another appointment to discuss what treatment would be. Mom, Fiance, A, and my friend who is a nurse all came with me to ask questions. The urologist seemed to be a little uncomfortable with the questions and I feel like he just wanted to get out of there. So bah.
In March, my neurosurgeon did another surgery to remove the tumor on my cerebellum. I can honestly say that I am sick to death of the surgery haircuts. I am able to hide it well, but they definitely don't try to leave you anything to work with. Jeez. That surgery went smoothly as well. In fact, I have recovered quickly and nicely from each of the 4 surgeries so far. The neurosurgeon tells me every time that he just can't believe it because usually people don't bounce back so quickly. And here I am, feeling like it should be quicker. Oh well.
I have since been referred to another urologist who I like much better. The neurosurgeon referred him to me and I think it works out better this way because they know each other and can be on the same page as far as my care goes. I am scheduled to have the largest tumor removed from my left kidney on June 23rd. It is a bit scary because they will have to cut open a large part of my stomach to get to the kidney. Knowing how badly it hurt when they made the incision to position the shunt tube means I know this one will hurt much worse. I have a second surgery scheduled for August 4th to removed the next largest tumor, which is on my right kidney.
It has been a crazy road so far, not without it's scary moments. However, I try to be as strong as I can and do my best to stay positive. It isn't always easy, but I think I am getting better.
I apologize if any of this was hard to read. It is currently 3:30am and it's hard for me to keep coherent thoughts long enough to write them down.
I will update more after my surgery on the 23rd. I will also do an A update sometime soon. If you want, check out the mommy blog I co-author with three friends: The Case of the Missing Cheerios. I also started a book blog if you would like to check that out: Books, Coffee, and a Thunderstorm.
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