“Be Still and Know That I AM GOD – Psalm 46:10”
Hi All!
I will not promise this will be short, but it may not be long…and if I tend to ramble more than usual, Mike and I have just had about 7 margaritas each…I am JUST Kidding!!
I know I updated yesterday and had an entry that held hope from the previous incident from last Thursday…and as I have said in this disease…It REALLY does change daily. For this entry is not the best, but I know it is not the worst and stems from the MRI results we have been waiting for.
Last night was long, at MDA till almost midnight, and as tired as we were, there were so many people that were not as fortunate as us to be able to go home only 15 minutes away to their own comfy bed, yet they were in local hotels or even the hospital itself. The drive home last night was good, jamming to our favorite songs and having much confidence in the results that were to come to us today. However, GOD continues to have other plans and has set us on a slight detour on the healing path that we were skipping along.
We sat down today with our new Brain and Spine team, (Dr. Groves has moved to Austin to pursue a new Brain/Spine Study Center and we wish him the best!) Our new Nurse Practitioner came in and sat down and broke the news to us that the MRI from last night in fact showed new spots on Mike’s Brain…a few spots. Immediately I looked at Mike and it took us back to the very beginning of this disease. She explained the spots were SO very small, microscopically almost, but still that was not comforting…there is new growth! She did her physical exam with Mike and as always, he maintains GREAT strength, reflexes and all signs of the brain functioning properly. As I reported in my last entry, all body functions remain the same other than his fatigue from the current radiation he has underwent. He maintains a great appetite and even his sense of humor!
We sat there for a moment filled with anxiety as we waited for our new doctor. We were so used to ALL our good visits with Dr. Groves…this new Doctor was surely not starting off on the right foot with us – I am kidding! She came in, and informed us she had just hopped off the phone with our Oncology team and a plan was set – well a few plans. OK, before I go there, let me tell you how she explained the new spots to us. She said from the scans…they are not guaranteeing that the new spots are IN the brain, but possibly floating in the spinal fluid which coats the brain. When thinking of the spinal fluid – think of a golf club (upside down) – the spinal fluid covers your brain, all down your spine and back up. She feels more confident that the spinal fluid has become infected and some cells are floating and are swirling around the brain area, causing these “new brain spots”. ALSO, she informed us that the spell Mike had last Thursday was possibly a seizure (she is not certain), but feels with this new development, that is what occurred. For this precaution, he has new meds that will continue to coat the nervous system to help avoid future episodes…Now on to the options that we are given, they are as follows:
1) Mike can undergo Lumbar Punctures (twice a week) for a few months to insert medicine into the spinal fluid to kill the caner. (OK, Ouch! We all know from previous entries, Mike is NOT a fan of LPs, so this made him cringe)
2) Mike will undergo an outpatient treatment and have a port inserted in his head that will allow medicine go directly to the spinal fluid w/o undergoing the pain of a LP. (this is the option that Mike has decided)
3) Full Brain Radiation – Unfortunately, it worked AMAZING a year ago when his vision was in jeopardy but that involved a lot of exposure to his brain, so they have opted not to do this.
We listened carefully to all options, and informed the Doctor that we would go home, talk about it and get back…the minute we got in the car, Mike decided he wanted to have the port installed…no ifs and or buts…I emailed the doctor when we got home, so now the new road in our journey begins. We will be meeting with a neurologist next week to consult about the port procedure, from there Mike will undergo a test to ensure his spinal fluid continues to flow smoothly with no hiccups…if all is passed, he will begin immediately receiving treatment to kill the cancer in the spinal fluid. The good thing is, this new medicine, will not interfere with the treatment his oncology team has in place for him to treat the new liver spots.
In all honesty I feel a little numb right now. Yet, I also have much peace. This news we have received was a blow to our mountain high feeling we had, yet, I know that it is not the end. I understand the “statistics” to people who read those and live by those are not SO great…BUT as I said in a previous entry…we are no longer living by “a prognosis”, in fact we were not given one tonight…the doctors are encouraging us to rest up and get ready for the road ahead…Mike has continued to amaze them, and I have confidence he will continue to do so. Don’t get me wrong, my heart is broken that it feels that we are starting from square one…but if we allow that to consume us, than we have accepted defeat. At this point, Mike has ensured me he is not defeated. He is tired and he is scared as am I, but he grabbed my hand and told me he was not giving up, so I will continue to fight with him…I would not have it any other way.
In closing, for all who love us, know us and have been on this journey since day one – do not be sad (I know easier said than done, because we are back into the unknown), but know that are hearts are lifted and we both stand in agreement AGAINST this disease. This disease will be the mountain that we cast into the sea with the devil chained to the bottom…CANCER will NOT define us! KNOW This! It has been a LONG year and half…and always knew possibly in the back of our minds, we would be called back to battle…here we go!
Love to you ALL !
XOXO Mike and Lyndie!
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