To: Family Member
From: Me
Sent: Thursday
From: Me
Sent: Thursday
This week was awful, I have started to feel much worse and cannot get out of bed in the morning. I cannot wake up with the alarm and I am very ill and can barely shower and get out of the house. I am so tired I am not eating (too tired to eat!) My vision is declining and my cognitive problems are increasing. And I am depressed because of it all.
I need to get this figured out before it is too late. On Sunday, I fell down the stairs because my peripheral vision was off again and I could not see the step ... just like I did a few months ago. I was unhurt, only bruised, but obviously shaken. The police came *(fun).
On Monday, per Dr. Female G, I had a thyroid ultrasound and chest CT. I am attempting to pit the two GPs against each other to see who can "win." She thinks my issues are related to endocrine/metabolic/thyroid/immune function and ordered every test in the entire world, hoping something sticks.
On Tuesday, I saw Dr. Male G to follow up on the labs from last week. He called me to come into his office to "discuss something of a nature we could not get into on the phone." On the way to his office, my vision went out again. For a full forty-five minutes, I could barely see. Jeff was driving this time. In the waiting room, I was joking (trying to) with Jeff about what could possibly be worse than getting news you have a brain tumor? ALS? Ebola virus? All this time, I have actually been a man? He was not amused.
Dr. Male G told me three times, "he did not want to scare me but" abnormal labs *(elevated homocystein and metabolic panel) indicate that I may be: 1) in early stages of kidney failure due to an endocrine disorder and/or 2) having transient ischemic attacks ("TIA") or mini-strokes due to interruption in blood flow to brain.
He posited that perhaps because of some type of vascular disorder, my body was preventing blood from getting to my brain, my kidneys and my heart. He does not know why this is going on but sent me immediately for a carotid artery study. I was told that if I had any more TIA episodes with sudden loss of vision, I was to go to Hopkins ER for immediate evaluation (where my neurosurgeon is). I am now restricted from driving - again - until there is an answer as to why my vision cuts out. I feel like this might have a negative impact on my car insurance rates.
After the Tuesday appointment with Dr. Male G, I had the follow-up breast MRI at Hopkins Breast Center. The radiologist did not like "something he saw" so did another thirty minutes of films. I have called the first breast surgeon who wanted to do surgery - Dr. J - and hope to hear from her tomorrow about the results of that MRI. That is probably unrelated to this other stuff but who knows? Dad still cannot say the word "breast" to me on the phone and keeps asking about "that OTHER doctor ... you know the one ..." before trailing off awkwardly. Doesn't he work in the medical field? Yeah.
While at the radiologist for my artery study, I pick up the thyroid ultrasound report from earlier in the week. It says my thyroid has "multiple nodules" (6 total) and there is an enlarged lymph node (@ 1.5 cm) in the subclavicle area. There is also a small mass in the anterior mediasteinum (chest) area on CT.
Jeff and I drive immediately to Dr. Female G's office to review these reports with her. She is sending me to an endocrinologist, a cardiothoracic surgeon and an ENT. I have been trying to get in to see an endocrinologist for awhile due to hormone issues I thought might be related to brain tumor, but they had a six-month wait. Once they saw my reports, they got me in within the week, and I go in this Wednesday. Dr. Female G said they will probably have to biopsy the thyroid nodules and lymph node. I hope an enlarged lymph node is not a sign that something has metastasized, which Dr. Female G suggested as a possibility. If it has something to do with breasts, Dad's head is going to explode.
To: Family Member
After the Tuesday appointment with Dr. Male G, I had the follow-up breast MRI at Hopkins Breast Center. The radiologist did not like "something he saw" so did another thirty minutes of films. I have called the first breast surgeon who wanted to do surgery - Dr. J - and hope to hear from her tomorrow about the results of that MRI. That is probably unrelated to this other stuff but who knows? Dad still cannot say the word "breast" to me on the phone and keeps asking about "that OTHER doctor ... you know the one ..." before trailing off awkwardly. Doesn't he work in the medical field? Yeah.
While at the radiologist for my artery study, I pick up the thyroid ultrasound report from earlier in the week. It says my thyroid has "multiple nodules" (6 total) and there is an enlarged lymph node (@ 1.5 cm) in the subclavicle area. There is also a small mass in the anterior mediasteinum (chest) area on CT.
Jeff and I drive immediately to Dr. Female G's office to review these reports with her. She is sending me to an endocrinologist, a cardiothoracic surgeon and an ENT. I have been trying to get in to see an endocrinologist for awhile due to hormone issues I thought might be related to brain tumor, but they had a six-month wait. Once they saw my reports, they got me in within the week, and I go in this Wednesday. Dr. Female G said they will probably have to biopsy the thyroid nodules and lymph node. I hope an enlarged lymph node is not a sign that something has metastasized, which Dr. Female G suggested as a possibility. If it has something to do with breasts, Dad's head is going to explode.
To: Family Member
From: Me
Sent: Sunday
Dr. Male G's office called me Thursday night with the results of the carotid ultrasound study. The test showed "subclavian steal syndrome." It was explained that meant "the carotid artery is not working properly and is shunting blood away from the brain, thereby leaving the brain oxygen deprived." It could explain the mini-strokes and fatigue. Treatment is bypass surgery.
His office is closed on Fridays, so I have an appointment on Monday to review the results and the next steps. I was informed it was not a true medical emergency - at this point - but, again, told to go to the ER in case I have stroke symptoms over the weekend. (I asked if that mean I should cancel happy hour plans or just drink more to numb the problem. Ha.)
The question is WHY? This syndrome can be caused by hardening of the arteries - common in 80-somethings - but why with me? What is causing everything to shut down at the age of 33? Clearly there is something not working correctly. I think my doctors are doing everything they can to figure it out, but ...
On Friday, I went to the neurocognitive neurologist at Hopkins for the cognitive evaluation. This round of tests were ordered by my neurosurgeon when I saw him the last time my vision went out. I also reported a handful of neurological symptoms that he could not explain. I have been complaining to Jeff for awhile that I just generally feel slow. I'll have trouble coming up with the correct word, spelling something I know how to spell, or with day-to-day recall ("Jeff, did I tell you that already?")
There have been a few episodes recently where I have been outright alarmed. I mixed up the gas and brake while driving and accidentally accelerated onto the sidewalk of Ethan's school. I could not recall Ethan's birthday when asked and then gave the wrong date (March? Something?). I was having dinner with friends when I went to the ladies' room. I was walking out of the ladies room when my friend passed me on the way in. She said something to me and my reaction was, "Huh. I know that person but cannot place how I know her." It was not until she returned to the table that I realized it was my friend passing me on the way in and I DID NOT RECOGNIZE HER.
I had been chalking these "episodes" up to the brain tumor, but now they think there is another cause. Yesterday, on the way to the doctor, I asked Jeff what year it was while I was filling out forms. I did not know whether it was 2008 or 2009. That cannot be good.
The cognitive exam yesterday was horrifying; it confirmed that I am objectively f---ed up. The exam lasted about an hour and was about various things to test my cognitive function, recall and memory. I was asked simple questions about my name, address, background, and education.
Sent: Sunday
Dr. Male G's office called me Thursday night with the results of the carotid ultrasound study. The test showed "subclavian steal syndrome." It was explained that meant "the carotid artery is not working properly and is shunting blood away from the brain, thereby leaving the brain oxygen deprived." It could explain the mini-strokes and fatigue. Treatment is bypass surgery.
His office is closed on Fridays, so I have an appointment on Monday to review the results and the next steps. I was informed it was not a true medical emergency - at this point - but, again, told to go to the ER in case I have stroke symptoms over the weekend. (I asked if that mean I should cancel happy hour plans or just drink more to numb the problem. Ha.)
The question is WHY? This syndrome can be caused by hardening of the arteries - common in 80-somethings - but why with me? What is causing everything to shut down at the age of 33? Clearly there is something not working correctly. I think my doctors are doing everything they can to figure it out, but ...
On Friday, I went to the neurocognitive neurologist at Hopkins for the cognitive evaluation. This round of tests were ordered by my neurosurgeon when I saw him the last time my vision went out. I also reported a handful of neurological symptoms that he could not explain. I have been complaining to Jeff for awhile that I just generally feel slow. I'll have trouble coming up with the correct word, spelling something I know how to spell, or with day-to-day recall ("Jeff, did I tell you that already?")
There have been a few episodes recently where I have been outright alarmed. I mixed up the gas and brake while driving and accidentally accelerated onto the sidewalk of Ethan's school. I could not recall Ethan's birthday when asked and then gave the wrong date (March? Something?). I was having dinner with friends when I went to the ladies' room. I was walking out of the ladies room when my friend passed me on the way in. She said something to me and my reaction was, "Huh. I know that person but cannot place how I know her." It was not until she returned to the table that I realized it was my friend passing me on the way in and I DID NOT RECOGNIZE HER.
I had been chalking these "episodes" up to the brain tumor, but now they think there is another cause. Yesterday, on the way to the doctor, I asked Jeff what year it was while I was filling out forms. I did not know whether it was 2008 or 2009. That cannot be good.
The cognitive exam yesterday was horrifying; it confirmed that I am objectively f---ed up. The exam lasted about an hour and was about various things to test my cognitive function, recall and memory. I was asked simple questions about my name, address, background, and education.
Highest level of education? Law Degree!
Is that a Doctorate Level Degree? Yes! Juris Doctor!
Did you pass the Bar? Yes!
That was about all I got right. I was asked to spell "world" backward and could not. I could not subtract by sevens. I was asked to draw a multi-box picture shown to me one minute before and could not.
I am literally, losing my mind, and there are no answers why. I get the results of this cognitive test Monday and then continue on the medical marathon with more appointments next week. I am nothing short of terrified. As someone who used to bill $350 per hour for my brain services (and still has $100,000 in student loans to pay back for the privilege of being permitted to do so), I found this to be the scariest test yet.
So ... what can you do? Send money *(just kidding). Will do my best to keep you updated. If I cannot, for some reason, Jeff will.
That was about all I got right. I was asked to spell "world" backward and could not. I could not subtract by sevens. I was asked to draw a multi-box picture shown to me one minute before and could not.
I am literally, losing my mind, and there are no answers why. I get the results of this cognitive test Monday and then continue on the medical marathon with more appointments next week. I am nothing short of terrified. As someone who used to bill $350 per hour for my brain services (and still has $100,000 in student loans to pay back for the privilege of being permitted to do so), I found this to be the scariest test yet.
So ... what can you do? Send money *(just kidding). Will do my best to keep you updated. If I cannot, for some reason, Jeff will.
1 comment:
Oh honey, I just want you to know I am thinking of you. Please please let us know if there is any thing we can do to help? Don't hesitate to call...Hugs..
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