Tuesday, Thomas and I met with Dr Levine(my neuro-muscular autonomic neurologist). We went over the chemo, blood results, symptoms, side effects. It was quite the eventful appointment as I was hoping to take a week break from chemo but no go. I could not convince him of that.
As we discussed the side effects of chemo, he was very concerned of how the seizures have dramatically increased. He wanted to have me admitted right then to the hospital for a three day EEG where u am hooked to hundreds of leads on my head to measure electrical activity. Problem is. You are seatbelted and strapped down in the bed unable to move without them getting a key. Yep. I wigged out. Bring on an anxiety attack. I told him I simply couldn't do that. So he agreed to an ambulatory at home test. He said he wanted to hook me up right then. I explained I had tons of dr appts and stuff to do. Please. One week. Luckily the EEG ambulatory team was booked so I have a week break.
Along with being concerned with the seizures, I am on the highest dose possible of low blood pressure meds. They cannot increase dosage at all. When the medicine is metabolized in my,system my blood pressure should shoot to about 150/90 and then self adjust back down to hopefully 120-140/80. At my peak I was 92/47. Not good. That means without medication I would be so bery low. Add to that the severe swelling of my body and out of control inflammation blood test markers and there is concern that the disease is causing my heart too much strain. So we start heart testing again soon as the EEG is complete.
Because I was so emotional last week on chemo, he switched my nerve medications to try and see if they were causing the issues along with the chemo. It is another experimental drug that will have to be overnighted to my home.
I was told they are seeing slight Improvement which is magnificent so early. However he warned that the emotions are because they are killing nerve and nerve damage. Nerves causes emotions to be wacky.
I'm sure I'm forgetting things but that is the highlight reel.
The following day imsaw my rheumatologist. I told him what dr Levine said and what biopsies /appts/ testing was done. He went over biopsy results.
Eye. My eyes can no longer generate tears or lubrication. I tested at a zero. None. Nothing. He said that was a first for him. But worse yet, the disease and nerves were destroying my cornea. He said it will take my sight and cause me to go blind. The meds are so expensive to try and slow down the blinding process that insurance will not pay. So we are at a loss here at what to do. I knew my vision was getting a lot worse. But....I had a complete eye exam in January. I haven't had time/money to get new glasses. I was told at this point, how fast my eyesight is deteriorating that I will need a new exam before getting glasses. Needless to say, this was not good news.
Lip biopsy. Inconclusive only because they could t find enough lip salivary glands to biopsy. He said that is indicative of full blown sjogrens that has rapidly set on a huge flare. His best guess. All of my teeth will crumble and fall out and there is no way to stop it. I am too dry that nothing will work. Problem is. How does my body heal from this??? Not sure. I have to see an autoimmune dental specialist. But he believes I will quickly lose the rest.
Vagina biopsy shows extensive damage and a far reaching progressed disease. Oh the joy of trying to correct this area. Let me say. Not fun. Very painful.
Esphogus biopsy shows that the sjogrens allowed the small fiber neuropathy to strangulate the esphogus. Causing complete paralysis. The inflammation and scar tissue and damage there is completely irreversible.
Blade biopsy is between 50-70% paralysis. It shows massive damage from the disease. As well as the intestinal biopsy. This is the cause of the gastroperesis.
All in all I am in what would be like a stage 4 of the disease.
As this doctor told dr Levine not to start chemo, he said that it very well could have saved my life and organs starting the treatment when he did. Because of my john Hopkins trials and neurologists extensive knowledge of my diseases, he would write to insurance stating he would take a secondary position to dr Levine in managing my health and the chemo. This is a HUgE win for us and what we prayed for.
Dr fairfax said that with these findings, I now qualify for Ivig, plasmapheresis and so many more treatments. However, the disease is so far progressed now that those are no longer options for my failing body. Bummer.
His recommendation is to up the chemo significantly. I'm on max dose for this nerve disorder. However, if they consider that I am headed into lymphoma, they may put me completely out and down and increase the milligrams and a number of pills. It would quadruple plus the chemo. He said it is nasty and I wouldn't move for months but it may back the lymphoma off. So we wait to see what these next tests come back and then discuss.
So I guess the excrutiating pain is my new norm. The chemo will be a life long constant. The bed sores and life finally caught up. We are now reactionary and trying to hit some things proactively.
All in all. I got what I most wanted. Diagnosis so insurance has to continue certain treatments. And having my neurologist as my primary doctor. He is such a great man.
As I sat in the rheumatologist office yesterday, I was not alone. As the doctor described and explained and gave results, it was if the Savior was sitting with me and calming me and holding my hand. As the doctor gave grave and dire news on some things, the following came to me.
"Jerlyn. I am here. The doctors may not have known what plagued your body but I did. I have walked this journey with you. I have guided you to good doctors. I have led them to help you. Each dead end provided valuable information to get us to this point. I have always been with you. I have protected you. Don't worry so much about the prognosis. You are mine. You are in my hands. Don't worry. I love you."
What a precious gift. What a tender mercy. What a blessing. As I'm told I'm going blind and will lose all of my teeth and they probably cannot provide dentures or anything and that I'm fighting lymphoma along with paralysis of so many organs. I could have broke down. Instead, my Savior lovingly lifted me and told me I am his. Peace. Calming. The Savior applied the healing balm of Gilead. The load was no longer heavy. I felt relief. I felt free.
I felt such gratitude that after six long years of being sick and the doctors know what is wrong and how my body is breaking down and which disease broke down and caused the next. I have an answer. And that answer lifted a huge burden. I no longer have to carry the burden of being questioned. The doctors that told me early on this was anxiety or me over exaggerating are wrong. It's nice to hear doctors say that I am one of the toughest and strongest and most determined fighters they have ever met. Because one thing is sure. I have given my all every single day for over six years. I have fought and fought and fought. I did not give up. I did not quit. I have walked this disease the best that I knew how and to the best of my,ability. And at the end of the day. That is all that is required of me.
One last thing my dear Savior told me. "Jerlyn, you are right where you are supposed to be. This is your journey. This was and is the plan. You have not strayed. You are on course." Nothing matters more to me than being assured of my Savior's love. And knowing that I am doing what he wants. In the end, nothing else truly matters.
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