Today was a very hectic stressful day. It started at 3:30am, when I had to get an MRI. The MRI was scheduled to get a another look at my vertebrae. The nurse gave me 4 mg of Dilaudid (normally I receive 2) and a Benedryl. When I got to the MRI group, they gave me what they call “protocol for sedation”. I was in dreamland!
Next thing I know I am waking up to the sound of people around me. I open my eyes and see the oncologist, Dr Bibb that works with my oncologist, Dr. Kookunoor. Dr. Bibb wanted us to speak with the neurologist and was very concerned with the initial findings on the MRI. He said I would most likely need surgery STAT and to stop radiation asap. I don’t remember most of the details of the conversation, so it is a good thing that I have my caregiver Lisa in town now, recording our conversations.
All of the drugs from the MRI situation put me into la-la land. I was having crazy hallucinations and was talking constantly in my sleep. I would say something in my dream and it was my voice that woke me up! I was talking to myself. Or I would be sleeping and talking to a person in the room sitting next to me, but talking about things that were totally irrelevant I guess the whole episode was pretty funny coming from the spectator.
I spent the next portion of the morning with my friends Juliet and Lara. Around 4, my lawyer Hillary came by to draw up legal docs for my will, power of attorney, etc. I was still feeling the effects of the medication and was having a difficult time listening and comprehending the legal jargon. Hillary was so sweet to go over everything several times to make sure I understood the documents. At one time, my room looked like a small business since we had 2 computers out, piles and piles of papers, a notary, two witnesses, the lawyer and me. It was all a little crazy. At least now I have this portion mostly taken care of. I still have a couple of docs that need to be finished, but that will be taken care of at a later time..this was enough for today.
During this time that we were working with Hillary, the neurologist showed up. According to the HOT Neurologist, the MRI showed the tumor on the T8 vertebrae larger and pressing up against my spinal chord, as evidence of the swelling within it. He is not convinced that there is a compression fracture as Dr. Bibb suggested this am…as it is not “broke down bone” causing my pain issues. Once again, we are seeing a pattern of conflicting observations, what a surprise! Now radiation has been put on hold until after surgery, as well as chemo. I am on Decadron (steroid to alleviate inflammation) and have been taken off Coumadin (blood thinner) b/c it would put me at risk during the surgery. I am however, remaining on Lovenox (another blood thinner that I inject daily) to prevent further blood clotting.
So here is what I gather are the next steps:
1) get me off the anti-colagulants
2) give me steroids (Decadron)
3) Find out about radiation following surgery (doc said this would be good to do)
4) Reschedule 2nd Chemo appt, and consult with the radiation oncologist about spinal chord surgery options.
I spoke with my oncolgist, Dr. Kukinoor and he said it doesn’t matter if bone or tumor is pressing on spinal chord, the surgery protocol would be the same. Radiation may still be used after surgery, then follow-up with chemo. So once again, my second cycle has been pushed back.
The good news is that we caught this early, before any paralysis or neurological consequences. Now we sit and wait for neurosurgeon to come back with options, he will work closely with the internal med doc. I am confused because Dr. Blinkhorn who lead up the internal doc team told me that they would no longer be working on my case, yet one of the residents (Dr. Wollet) still comes by everyday. I have currently been put on bedrest to avoid micro trauma. At least I was able to negotiate with the doctor about being able to use the bathroom vs. a bedpan or bedside toilet. Whoo hoo!
I am a little nervous now about everything being pushed back and the new possibility of the bone/tumor pushing my spinal cord. I am not seeing any major symptoms leading to paralysis such as weak legs, etc. I have started getting small tingling sensations throughout my lower body….I’m not sure if it’s from the medication or what.
I would really love to hear some really positive news. It is really difficult to be positive when I keep hearing bad news, and I’m locked up in the hospital for an undetermined amount of time. I haven’t been outside now in two days, and it may be longer now that I am on bedrest. I am sure that many of you would be going crazy now being in a room for just 1 or 2 days without any outside stimuli. Thank god for visitors, tv and the internet. I definitely need to make sure to limit the visitors though. One day I had 8 visitors and it was too much. I ended up throwing up twice that night from all of the comotion. So, if you want to come visit, please call ahead of time. That way I can coordinate easier with others and make sure that I will even be in the room. There are many times when I am pulled into a test or am outside of the building, so you would not find me in my room.
Anyway, please keep sending your love and support! I need it more and more as these days stretch into months. Please don’t forget about me!