While we were watching the football game on Thursday night, everything was fine. I was reading something on my phone and then looked up at the television about 7 feet from me. Everything was double vision. There were lots of football players on the field. No matter what I did. I couldn’t shake the double vision, unless I covered one eye, right or left. Covering my right eye and trying to just look with my left eye felt more natural. My right eye felt like it lagged when I looked right to left or up and down. I didn’t have any other symptoms, and I don’t have great far vision anyway, so I didn’t pay much attention to it, and just decided to go to bed. Once in bed, I could watch a movie on my iPad, and as long as it was no further away than about 18 inches from my face I did not have double vision. But when I woke up the next morning, it was just as bad as the night before, almost worse, and was making me sick to my stomach. So I called my Oncologist, and she said I needed to go to the ER.
Well, if you’ve ever gone into an emergency room and start talking about double vision and issues like that, you know that you typically get routed as a stroke protocol. Which I did, and I was OK with as it means things tend to happen a little bit faster than normal. And it brought one of my most favorite ER docs, Brandie, Neidens, to my bedside. And remember before when I talked before about the “ where your care is personal” thing? Well, that’s a North Kansas City hospital motto. And my nurses sure thought it was weird when my ER doc gave me a hug before I went to CT until they realized we knew each other. CT fortunately showed no major mass, lesion or stroke in my brain. But between the double vision and the other symptoms I’ve been having for the past three weeks. It’s definitely bought me an admission to do a more in depth MRI of my brain and neck.
Other symptoms you ask? How about extreme fatigue to the point that I am barely able to get out of bed and go downstairs to the couch every day before I’m exhausted and my heart rate jumps to 150. Or the fact that I’ve lost 33 pounds in about four weeks due to lack of appetite, nausea and vomiting. The terrible epigastric pain that seemed to come hand-in-hand with the Xeloda-the latest chemo I have been prescribed. AND, Not to mention my plummeting red blood cell count, hemoglobin, and platelets. Which I have been messaging my oncologist about for at least the past two weeks, and not really getting any good answers.
The hospitalist made it around about 2:30 in the morning and started putting in her orders. Early the next day, my sweet friend Gina came and got me for my MRI which happened to include my brain, neck (including carotid arteries), CSpine, T-spine, and L-spine, all with and without contrast. That is about a 2 1/2 hour MRI visit. Fortunately, my nurse understood my loathing of the MRI machine and loaded me up with some Ativan and morphine. By the time my imaging was done I felt like I had only been in there for about 20 minutes and not the nearly 3 hours I really was. Then it was off to ultrasound to check out my liver and check my legs for a blood clot due to the weakness I’ve had with them recently.
Ultrasound of my legs is negative-no blood clot.
The ultrasound of my abdomen showed much of what we already knew about the metastasis in my liver and no big new changes.
The MRI of my brain and neck show beautiful carotid arteries with no narrowing and no sign of lesion or mass in my brain or neck other than an old stroke.
The MRI of my CSpine shows degeneration and osteoarthritis, with some spondylosis and neural foraminal narrowing at several levels- otherwise not great in the neck.
The MRI of my C-spine, T-spine and L-spine did show that the cancer is most likely in my bone marrow now. This makes a lot of sense when you think about my symptoms over the last four weeks which is about the same timeframe my labs have been dropping. A lot of times the labs correlate with the MRI, showing cancer in the bone marrow and in my case it totally makes sense.
From what I understand from the oncologist that was on call, there’s no special treatment for cancer in the bone marrow, but we do have to treat the cancer. And I have not been on chemo consistently for over a month due to the horrible side effects.
He felt that was a decision I would need to make with my regular oncologist with whom I have an appointment tomorrow.
He did give me an iron infusion to see if that would help with the weakness, and bring any of my labs up. It helped very little with the weakness. I did not bring any of my labs up.
Back to the double vision, I ended up having a lumbar puncture to make sure there are no cancer cells in my cerebrospinal fluid. Some of those results can take up to a week to come back, but so far so good. And the ophthalmologist came and dilated my eyes to make sure he could see in my eyeball and my optic nerve and there are no lesions or masses there. The double vision can end up being caused from something viral, it can also be a syndrome due to my cancer that again, you only get rid of by treating the cancer. Neurology feels that it will go away on its own in 4 to 6 weeks. My oncologist could have the lab results as early as tomorrow so we may know something then. If that’s all negative, it’s most likely viral.
About the bone marrow cancer… We should find more out tomorrow from Dr. Satelli. In the meantime, I’m hoping to get a red blood cell booster to help with the extreme fatigue that I have. Because those of you that know me know that I don’t lay around and do nothing very well. But the fact that we’ve had to put a chair in my shower, have someone wash my hair over the sink, need help getting up and downstairs, and spend the majority of the day in my bed, or on the couch, tell you just how awful and weak I feel.
My wonderful husband has picked up all the slack around the house from cooking and cleaning to completely taking care of the bald kid because I simply cannot right now.
I feel helpless and I hate feeling helpless. I’m hoping we’ll have a plan of care tomorrow and I’ll keep you all updated on what that is. In the meantime, if you could send some prayers and good vibes for increased blood counts, less weakness and double vision, it would be greatly appreciated.
Love and hugs,
K
