Johns Hopkins (Baltimore)

Traveling by plane, train and automobile for answers.

This was the last visit for opinions. We have already visited the 10th ranked hospital in the country (Cleveland Clinic) and the 4th (NY Presbyterian) and today was reserved for the best in the country. Saving the best for last!

We met with Dr. L who is a neurosurgeon and happens to be running a long term study in subependymomas. He is an expert in skull based tumors and has performed over 1,500 surgeries. He was very kind and personable which almost made up for the 3 hours that we waited to see him.
He explained that he believed that the brain tumor I have is a subependymoma, which is great news. Of all the potential tumors I could have this is the most desirable. He told us about the study that he is conducting on subependymomas and he happens to be collaborating with Columbia where we just were on Tuesday. He also asked me to participate in their study, which of course I am happy to do.

Dr. L explained that in the study so far they have had 50 patients from John Hopkins who have been diagnosed with subependymomas and of those only 2 people have had surgery because their tumors were growing. After surgery pathology determined that those patients did not have subependymomas, they had another type of glioma.
That means that they have been correct in diagnosing 96% of the time thus far.

Dr. L has a hypothesis that people are born with subependymomas. He believes they could be some variant of “normal” if it is true that some people are in fact born with them.


The last 2 questions that I asked him were these; have you had any patients who have developed hydrocephalus and have you had anyone else who has presented with their tumor in the roof of their ventricle (they usually occur on the floor). His answers were no, no one has developed hydrocephalus. If he did have a patient develop hydrocephalus he would not recommend the procedure that Cleveland discussed. He said that it would be a bandaid and not really deal with the root cause and that in such a case he would remove the tumor surgically which would resolve the excess accumulation of fluid.
To question number 2 he answered yes, he has had a patient who had a tumor in the roof of their ventricle. That patient was one of the two patients who had needed surgery because their tumor was growing and it wasn’t really a subependymoma.

He wrapped up our visit with recommendations similar to Columbia, close follow up to watch for growth and after a few years if we see nothing then we can be fairly certain that it is in fact a subependymoma and I am in the clear.

Johns Hopkins campus.

On the way back to the car I was quiet.
I am a verbal processor, I talk my way through every issue I have. Except for this.
This is the first time in my life where after every appointment I have needed time to really absorb and process what had just happened before I could talk about it. This is different. It has made me realize that one really cannot predict what they would do in any given situation because until you are there it is just speculation. I would never imagine that I would need so much space and quiet time.

When I was ready to talk Patrick asked how I was feeling and I hesitated and said “Well I can’t help but to think about the patient who presented like me with a tumor in the roof and it turned out that it wasn’t a subependymoma.” My husband quite literally put his hand on his head and sighed the biggest sigh you could imagine and said “Amy, we have traveled to 3 top hospitals in the country and you have been given the same news by everyone. They all believe your tumor to be a subependymoma. What is it going to take to convince you”?

This poor man to have to deal with me.
He’s not wrong. I’m not convinced. I want to be. I am very hopeful and optimistic that I am in the 96% and yet….

This is a funny phenomenon. I was thinking about how when it comes to our health we often have a completely different reaction to statistics than in other areas of life. When I hear that there is a 90% chance of rain I assume it will rain. When I hear that there is a 96% that my brain tumor won’t cause problems in the future I think “I’m not so sure, what about that 4%”.
I’m not sure if this is because I literally work in a world of the statistically insignificant with fatal consequences and numbers less than 100% don’t bring me comfort. Perhaps it’s because I haven’t made total peace with my own mortality. Maybe I’m more of a pessimist then I think? I’m can’t tell you exactly, what I can tell you is that I know I am driving people mad! I’m sorry friends.

I also have been thinking a lot about my decision to call my blog “Evicting Roxanne”. This is was a presumption on my part that I would have surgery, that I would chose that path, that there was no possibility of living with something like this. We can chalk that up to another part of this process in which I have grown.

The truth is that this experience is a microcosm of life, it’s complicated, it’s messy, it has highs and lows and in the end it shows us our strengths and weaknesses.


NY Presbyterian

Today is the day I have been waiting for. My husband and I woke up at 3 am to catch the first flight out of Buffalo into New York City. I was equal parts nervous and excited. I can’t explain why but I was putting extra weight on what the doctors at NYC had to say over Roswell and Cleveland. Maybe it’s because it’s the 4th ranked hospital in the country for neurology, maybe it’s because we had a connection to the doctors through a friend, I can’t exactly put my finger on it but I was anxious to hear their opinions. My stomach was in knots, we went to an amazing bagel shop (of course it was amazing, its NYC) and I couldn’t finish what I bought. I couldn’t finish my coffee even though I was exhausted. I just wanted to get through these consults.

When we arrived at the hospital it was a bit comical for me. They had just implemented a new electronic medical record system (Epic, get ready work friends!) and everyone was very stressed about it. Working in healthcare has taught me to be extra patient in these situations.

The first doctor we met with was the neurosurgeon, he had a VERY fancy office which radiated “Im hot shit and you should value my opinion”, and we did!
Dr. B was very tall and kind. He showed us my most recent MRI and explained why he thought it was the type of tumor that they believe it to be. At this point the consensus is that this is a subependymoma.

This view cracks me up every time!


That my friends is the best possible option of all the tumors that it could be. They are ridiculously rare, benign and the slowest growing. This is great news but I will take a moment to explain that just because a brain tumor is benign doesn’t mean that it doesn’t cause problems for people. I have learned a lot over the last 2 months, for example most brain tumors are benign, only around 30% are malignant and they are the ones that everyone fears getting (most notably glioblastoma). Benign brain tumors can reek all kinds of havoc on people’s lives. The list includes epilepsy, stroke like symptoms, blacking out, double vision, issues walking, lactating, migraines, constant nausea, the list could go on and on.
Anyway I bring this up because prior to being in this situation I did not realize any of this and frankly probably didn’t have empathy like I do now. Like many things in life until we gain first hand experience we just don’t understand what others are going through. For me this is more verification to stop being judgmental because there are a lot of paths I have no clue about.

Ok so to get back to the appointment. Dr. B felt that since I am not showing any signs of hydrocephalus (accumulation of fluid in the brain) that we should not do surgery right now. He explained that we should continue to monitor me closely and if there is any growth if the tumor then we should do surgery then. He had a lot more confidence about removing the tumor then Cleveland did, and his rate of postoperative neurological complications was much less than what I had read in the litterature. Phew!

Feeling positive for the first time in 6 weeks.

Time for the neuro oncologist. My heart stopped for a second we we got off the elevator and a huge sign stated that we were at the “Glioblastoma Center”. I looked at my husband and said “I don’t want to be here, I don’t want to be at the brain cancer center. This is literally the place that no one ever wants to come to.” Down the hall we went, and met our first doctor, a wonderfully sweet fellow named Peter Pann.

With Peter Pan anything is possible!

Dr. Pann was lovely and had an amazing bedside manner and spent a good long time with us while Dr. I was looking at my MRI. Then they sat us down and reassured us that my tumor does not appear to be aggressive in any way. They believe it is stemming from my fourth ventricle and not brain tissue (that is great news) And it is possible that it might have stopped growing years ago and I may never have a problem with it. They agreed that I should be followed closely having another MRI in 3 months and then every 6 months for 3 years. If there is no change after 3 years we can assume that it has stopped growing.

There was talk of putting me in a study about subependymomas which I am completely open to. I am an information girl and always go to the research when I want to understand something . I would happy to be part of helping others in future to better understand their situation. Hopefully they call me and I can participate.

Dr. I did have some concerns about my memory loss and suggested that I go to cognitive therapy, I will tackle that after my vacation (if I remember)!

All of this news called for a celebration drink! So off we went to Chelsea Market.

Seriously delicious Korean food to celebrate.

When we arrived home there was a book waiting in the mailbox for me. I had started to read it online and decided it was worth putting in my library. Until further notice this is my new story, I am living low grade. Hopefully for a really long time.

I have one more appointment, Friday I am heading to Johns Hopkins. I realize this might seem like overkill to some but it’s my brain, not a toe! Until then…

The Art of Racing in the Rain

Last night I took a wonderfully relaxing restorative yoga class, complete with candles and chanting music, it was lovely. When I arrived home my very adoring husband met me in the driveway and said “Come on let’s go to the movie store and get a rom/com”.
Huh? A rom/com? Really?
“Yes, you like those”, he replied and off we went without any argument from me.

The movie store was empty so we were given a lot of attention by the salesman who walked the store with us and tried to help us find a movie that was appropriate for the whole family. There were two that he recommended and one had a dog so I chose that one, The Art of Racing in the Rain.
Disclaimer, if you have not watched this movie and want to be surprised turn back now and stop reading the rest of the post!

Who could turn down a movie with that cute face as the star?


All I knew was that this movie had a dog and I thought I had heard it was a book turned into a movie and people said it was good. Anyone who knows me knows I don’t really follow pop culture too closely and that combined with my horrendous memory makes choosing movies a bit of a crap shoot.

So we know in the first scene that the dog is going to die, I’m not spoiling anything here it really is that obvious.

I can handle a dog dying, as a matter of a fact I began thinking this would actually be good for me because I have been questioning if I am even capable of crying anymore. Since starting the anti anxiety meds I have felt a lot less anxiety (thankfully they are doing their job), but I have also felt a lot less sad and I’m not always convinced that is a good thing. You see I am a full experience kinda girl. I want to feel ALL the feelings, good bad, every single bit of it, just a tiny bit less worry! So anyway since I haven’t really had a good cry in a while I figured this would bring some things to the surface and show me that I am still whole.

Here is what I didn’t expect. About halfway through this movie the mom starts to feel sick and the dog immediately knows that something is not right with her, he can smell what is happening. I looked at my family and said “Oh my God, the mom has a brain tumor”! Seriously?
How is it possible that of the hundreds of movies available I chose the one with the mom who has a brain tumor? I know exactly how this is possible because my patients talk to me about this all the time. In their cases it is movies about babies dying, stillbirth, miscarriage. No matter what they put on tv to distract themself somehow it finds them, the same way that this movie found its way into our dvd player.

It goes without saying that the mom dies, then the dog dies. The last time I cried this much through a movie I was watching Stepmom, if you have seen this movie then you understand there is just no way around it.

Back to last night. So it goes without saying that I ugly cried, and my kids hugged me a lot (this was the first time I have really showed any emotion about this in front of them). Yes, I had a discussion with them about the fact that the mom in the movie probably had a very aggressive brain tumor based on what we saw transpire with her, and that is not what I have (at least I hope not, fingers crossed for a good scan this week).

I have worked in the world of grief for eight years now, every day is death, grief, & loss. Working so close to death by default makes you consider your own mortality in a way that the average person is probably not accustomed to. This isn’t new for me or uncomfortable. But it has never felt as close to home as it does now. Even though it may still be, and hopefully is VERY far away.
Something I have learned over the years by working so closely to death is that all we are guaranteed is today, right now, the present. I try hard to pay attention to the small details, to enjoy the moments and to not take them for granted.
The dog in the movie stated that “The good driver knows not to dwell in the past or the future but to focus on the present”.

Some days it is a struggle to completely focus on the present but that is my goal, to continue to notice, wonder, revel, and enjoy the moments I am given. Also, I’m taking recommendations of shows that do not involve moms dying from brain tumors!

Cleveland Clinic

Today we met with a neurosurgeon who specializes in posterior fossa tumors. We were finally able to actually see my original MRI.

Roxanne is circled in red.

Sadly because Dent was unable to do their jobs correctly, the disk was empty that was supposed to contain the most recent MRI with contrast (insert many swear words here). Perhaps this is why people become type A, maybe they have learned that if they don’t do things themselves they won’t be done. I digress…

So Dr. K explained how my tumor is on what he referred to as “no mans land” (very reassuring) and that there was no easy path to surgically remove Roxanne. If he used the upper route then he potentially would not be able to reach the bottom of the tumor.

Upper route to remove tumor.

If he uses the lower route then the angle isn’t right to reach the top of the tumor. He did say that if the tumor does continue to grow that it could create a pathway for removal that is not currently there.

Lower route for tumor removal.

Dr. K is fairly confident that the tumor is not cancerous but agreed to do an MRI of my spine just to make sure there were no “drop metastases” anywhere.
Since I am having a repeat MRI next week he suggested that we review that and if there is no change then wait another four months and MRI again to keep on eye on it.
In the meantime he will take my case to the tumor board and see what their consensus is.
Wait! What about hydrocephalus?!?!
Well Dr. K has a plan for that too. Apparently if I develop any signs of hydrocephalus then then can take a small camera and drill into the top of my head and navigate the camera down through my 3rd ventricle and create a new path for the cerebral spinal fluid.

To be perfectly honest this was not how I wanted this visit to go. What I wanted in an ideal world was to be told that I should have surgery and that the complication rate was low and that I was in very experienced hands and I shouldn’t worry. I suppose MicK Jagger was right and you can’t always get what you want…

I have promised my husband I will stop researching until we go for our next opinion in NYC, wish me luck… 😂

Jumping to Conclusions

Its been a rough week mentally for me. On Wednesday I went to my local hospital and tried to get a copy of an old CT scan from 9 years ago. Both doctors here in Buffalo had asked me if I had ever had a previous MRI at any point in my life. They both suggested that I may have had this tumor for decades and since I am “asymptomatic” (in their opinions) that this might not be a big deal. The woman at medical records kindly explained that they only keep scans for 6 years and mine was already destroyed. However there was a report in my medical record and I could have that. When I looked at it, it was no help. She saw the look on my face when I was looking it over and asked me what I was looking for specifically so I explained. “I was diagnosed with a very rare type of brain tumor and I’m trying to figure out if it has always been there or if it is more recent”. She told me that there was a room full boxes of old medical records waiting to be destroyed and she would look to see if my full record was there. Bless her, it was.


The full report showed that I had no lesions/masses/calcifications, nothing… That means that this tumor has not always been there and it is something that has developed in at least the last nine years, but maybe 6 or 3, there is really no way to know when it started.

It wasn’t until the next day that I started to put the pieces together and that’s when I got worried. The doctor from Roswell told me that when they put my MRI up on the screen there was unanimous agreement that it was a subependymoma. He told me it was slow growing. I asked how slow growing, that is a very subjective term. He said 1mm every 1-2 years. Ok I thought, that doesn’t sound too bad, but, this thing is already pressing on my aqueduct so how many more mm would it need to grow before I develop hydrocephalus? Well that was before I had the old CT scan results. My tumor is 17mm x 9mm. If that tumor is less 9 years old then it is absolutely not growing at average of 1mm per 1-2 years. That means it is more aggressive.


My husband says that I can’t jump to conclusions because I have incomplete information. I wish I could say that I have been successful and that I haven’t been worked up, but that would be a lie.


One of the doctors I am going to see at NY Presbyterian thought it was a low grade glioma. Until this week I had completely put that out of my mind, mostly because it was the scariest of all the potential differential diagnoses that were on the table at this point. But now I felt the need to revisit that idea. I don’t like it, it’s giving me crazy anxiety.

So until Wednesday when I can go to Cleveland Clinic and ask a thousand questions I’ll be hanging out with my cat giving myself pet therapy.

The worlds best snuggler.

Gratitude

Today my spirit is overflowing with gratitude. I feel so lucky to have so many people in my life that care about me and have gone out of their way to help ensure that I end up in the hands of a skilled neurosurgeon. 

We live in a time where the word privilege is thrown around quite a lot,  today I am feeling that privilege more then I ever have in my life. This makes me both grateful that I happen to be in this position but also sad for others who I know do have the same kind of options. 

Thanks to the many supportive friends and family that I have, we have secured appointments to see the top neurosurgeons at Cleveland Clinic (Jan 22), NY Presbyterian (Feb 4th) and Johns Hopkins (Feb 7th). Without people holding my hand on this journey and offering their support this would not be possible, and while holding space for that gratitude I also began to think about 14 years ago when I went on a mission trip to Philadelphia. 

I was in my last semester of my bachelors program and had found out the day before I left that I was pregnant with my first baby, my daughter. I was excited to be part of this trip. I have always been a seeker of experiences and I couldn’t wait to meet people who I knew would have a lot to teach me. 

I did learn a lot on that trip, I learned about the resiliency of the human spirit. I also learned firsthand about privilege. One of the days I spent there was at what was essentially an adult daycare, people came for the day and were entertained with games and crafts, snacks and companionship. On this particular day there was an elderly man who was about 70 years old, he began to have a tonic clonic seizure, and I being young and inexperienced in what working in a poor community meant didn’t understand why no one was calling for help. I got very upset and one of the workers pulled me aside and said “darling, we don’t call an ambulance for people like him, we lay him down on a couch and hope it stops”. No one had meds for him, no one had love for him, it was one of the saddest experiences of my life (and we all know I have had a lot of sad experiences). There was no family to call to come and get him, to let them know that he was not doing well, there was just nothing. I have thought a lot about that experience at many different points in my life, but last night and all day today I haven’t been able to stop thinking of him. Thinking of all the people who do not have access to good health care let alone the best health care, all the people who don’t understand how our health care system works and how to navigate it, all the people who don’t know to get a second opinion or don’t have time. I am privileged and I know it. I own it. I also am very grateful, this is not something I take for granted. 

Knowing that I have a very rare type of tumor is terrifying, it would be easier to hear “we do 10 of these surgeries a week, this is no problem”, but that is not my reality. A small weight has been lifted knowing that I am seeing some of the best doctors and hopefully 2 out 3 of them agree on a plan moving forward so I can find some peace. 

Searching…

I heard back from Roswell. Their advice was to do nothing for now and rescan me in three months. Apparently when my MRI was put up on the screen at the tumor board there was resounding agreement that my tumor was a subependymoma.

Here’s the thing, I’ve been doing a lot of reading, and this is what I know as of now. The University of Texas MD Anderson Cancer Center did a 18 year retrospective review of patients with 4th ventricle tumors. There were 55 patients in 18 years who presented with a tumor in the same location as me (not all were subependymomas). Johns Hopkins conducted a similar study over 19 years and had 15 patients.

Texas MD Anderson is the number one ranked hospital for cancer. Johns Hopkins is the number one ranked hospital for neurosurgery. I wonder how many patients Roswell has seen with my type of tumor. They are ranked 14th in the country for cancer and do not even show up in the list for neurology (I scrolled through the top 100 and then gave up). I guess my point is that I am assuming that they probably have very little experience with this type of tumor and therefore I have very little faith in the guidance they have to offer.

The neuro oncologist there did agree to allow me to have a repeat MRI with contrast at the end of the month so that when I go to NY Presbyterian Columbia/Cornell and Cleveland Clinic I will have multiple scans for them to review and they can assess if there has been any change in the last 6 weeks.

I found a book called Living Low Grade, it was written by a man who was diagnosed with a low grade brain tumor (similar to mine) that was inoperable (not my case). He talks about the stress of knowing that something foreign is occupying space in your body, something that doesn’t belong there. How do you continue to live like you did prior to diagnosis and not attribute every ache/pain/twinge to your brain tumor growing? I think that is the space that I am contemplating currently. Am I capable of living low grade for a period of time, potentially years. I don’t know the answer to that yet. I think once we visit Cleveland and NYC and I have more answers about the risks of the very invasive surgery I would need then I will be able to better assess how I am feeling. Until then I’ll be on a yoga mat trying to restore some peace back into my body.

My favorite yoga studio.

Worry

As you can imagine I get a lot of well intended advice at this point on my journey. Most notably “try not to worry”. That flies off the tip of peoples tongues without a hesitation of what they are actually saying. Worry by definition is “a worried condition or feeling; uneasiness or anxiety”. Anxiety by definition is “distress or uneasiness of mind caused by fear of danger or misfortune”. I am going to go out on a limb here and say that feeling unease about the fear of brain cancer or the the fear of neurological complications from surgery would not be unwarranted. Actually, I wonder how someone would be given a diagnosis of a rare brain tumor and not worry, not be fearful? Sometimes it’s hard not feel like this guy below, like my worst nightmare has happened and now I’m just waiting to be eaten up and swallowed whole.

Other times, I don’t feel anxious at all. I feel super optimistic, I feel like “I’ve got this”. Some days I am panicky for reasons I can’t even put into words, it’s just a bad day.
Anxiety stems from the fear of the unknown and that is the landscape that I am negotiating right now, the unknown. This could go a few different ways. I could have surgery, recover perfectly and have a wonderful story to share about my new life perspective, or it could have a few more bumps in the road, bumps that I cannot predict, maybe bumps that never get smoothed out. That is the worry, events and circumstances that I have zero control over.
I know people have good intentions when they tell me not to worry, they are too are worried, they are concerned over both my physical and mental health, but when I hear this I always conjure up in my mind the meme below.

It’s the same concept for worrying. Telling me stop doesn’t help me to not do it. But what does help is having an outlet, like writing this blog, going out for tea/coffee, joining me on a hike, being an ear for me if I’m having a bad day. Worry is just another part of the process, I can’t stop it, I can’t completely control it so I oscillate between avoiding the fear and confronting it.

Yesterday a friend brought me lunch and along with it a very small bag. When I opened it what I found inside were 10 tiny worry dolls. This friend is a cancer survivor and said to me you need somewhere to put your worries so give them to these little dolls each night.

Guatemalan worry dolls

No one can take the pain and stress of this journey away, all you can do is walk along side someone as they learn to navigate this terrain for themselves, and I cannot express how grateful I am for all the people in my life who are walking alongside me.

We scheduled our second opinion visit to New York Presbyterian Columbia/Cornell for February 4th. We will meet with a neuro oncologist and neuro surgeon who has experience with this rare type of ventricle surgery.

Ritual

I woke up this morning feeling very peaceful, who knows why, but I’m not arguing when it happens. When I have moments of peace I just drink it up like my favorite chai tea. I sat on my couch for about an hour and watched the snow falling from the sky, watching the squirrels running up and down the trees, and I got to contemplating ritual. How ritual plays a role in our lives. What is means to us and how we make meaning out of our lives through ritual. One of my favorite rituals this time of year is to read the story The After Christmas Tree with my kids.

When my kids were very small I discovered this book on one of our trips to the library. The kids in the story are sad that the holidays are coming to an end. The parents decide to have an after Christmas party to help quell their kids sadness and the outcome is helping to feed the birds and wildlife, a way to give their tree a second life. The kids make bird feeders, string popcorn, and scatter nuts around the tree that is now placed outside their window so they can watch as others also get to now enjoy it.
The ritual of reading this book and then making bird feeders has been one of my favorites for over a decade. Now my kids are older and don’t really want to participate. I am committed however to rituals and especially this one. I know that many years from now when I am long gone my kids will talk about doing this every year, I hope that they will recreate this ritual with their children. I know that everything that we do will be not be repeated by our kids, but I do hope that some of it sticks and that there is sentimentality that will be carried along with it.

I borrowed my niece to carry on the tradition!

Ritual is what brings us comfort, it ties us to our history, our traditions. My desire is to entrench my family into a life rich with ritual so that as life changes and people come and go there is a constant feeling of security in the rituals that will continue to happen regardless of who is present.

Laurel and Andrew six years ago (2014) with our “after Christmas tree”.

On a side note the neuro oncologist suggested that I have a lumbar puncture (spinal tap) done to potentially determine if the tumor I have is benign or malignant. It is definitely much less invasive than brain surgery and could help me to make a decision about ultimately having the surgery or not. The idea is that the tumor should shed cells into my cerebral spinal fluid and that when that CSF is looked at they could determine exactly what type of cells the tumor is shedding. It sounds like a simple enough procedure so I will probably opt to go that route.

Pick a Tumor, Any Tumor…

ependymoma, low grade glioma, astrocytoma, subependymoma

Today was the first visit with a neuro-oncologist. Another doctor, another opinion on what kind of tumor it is. Today’s vocabulary lesson was the word astrocytoma. A quick internet search and I’m now more confused than ever.

https://abta.org/tumor_types/astrocytoma/

So basically subependymomas are a type of ependymoma. Astrocytomas are a type of glioma. All of these are possibilities but no one knows which one. Aghhhhhh.

The doctor we met with today was lovely, had a wonderful bedside manner and was very patient with all of our questions, and there were a lot. Because this doctor was not a neurosurgeon he was unable to answer a lot of our questions but is going to take my case to the tumor board at Roswell next week. The tumor board is a group of tumor specialists who meet bi weekly to discuss unusual cases. He will present my case and they will call me to tell me what they believe my best course of action is.
The biggest dilemma to consider is do you live with a tumor in your brain that may or may not at some point become problematic, or do you undergo major surgery that has a high likelihood of a major neurological complication in order to prevent a potential disaster in the future.

How does one make this decision? How do you weigh the least desirable potential outcomes of surgery against the least desirable potential effects of a tumor spreading? I don’t remember taking a class in high school or college that prepared me for this. I don’t have a phone a friend option because no one can make this decision for me. My husband says we need more information, that more data will help me to make a decision. I agreed and got 2 more copies of my MRI to send to The Cleveland Clinic and Johns Hopkins, maybe they will come back with 2 more opinions and muddy the waters even further. Until then I will be wandering the forest seeking answers from the trees or the whispering winds or whatever can help guide me through this painful process.

”The answer my friend is blowing in the wind”.