Just getting caught up on this whole thing? – Read each update from the bottom up. It will make more sense.
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Want to send Jen’s MRIs, CAT scans to a medical expert? – You can download them all HERE on the Sites & Files page AND/OR view them as movies @ YouTube HERE.
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Dec 27, 2010 – meeting w/ Dr. Weinshenker and Dr. Tang at Mayo Clinic
Well, we’ve gotten a “final” diagnosis (I guess). Go here to the Latest Updates tab to read all about it.
Dec 13, 2010 – meeting w/ Dr. Corboy of Rocky Mountain MS
We met with Dr. John R. Corboy today at the Rocky Mountian MS center here in Aurora, CO.
All in all, a good meeting. – But once again, still quite a few “unknowns” to work through.
We asked him what he thought the likelihood that this is tumefactive MS. – His reply: “reasonably likely”.
He said: Tumefactive MS “tends to be more persistent”. – A “normal” MS attack usually occurs over the course of 2-6 wks. He has seen that tumefactive MS attacks can “wax and wane” for longer periods of time. (Jen is now past the 6 week period for symptoms.)
We asked him: Are her deficiencies likely to persist? (loss of strength and coordination on her left side, etc.) – His reply: 2/3rds of “routine” MS patients recover all deficiencies following an attack. – 1/3rd don’t.
We asked him: What tends to happen with tumefactive MS sufferers? – His reply: They tend to develop “run of the mill” MS.
We asked him: What “type” of MS is she likely to have with this tumefactive MS? – His reply: “relapsing / remitting”. (See the different types of MS here.)
We asked him: Is this possibly some other type of demyelinating disease – or even some other type of disease that isn’t demyelinating? – His reply: “yes” – below are the other possiblities:
He told us that Mayo will likely want to run (again) almost every test that she has had already (happy x-mas, eh?). – So that is what we are “looking forward to” this December 20th through the 30th in Rochester, MN.
New tests she is likely to have:
- PET scan
- NMO scan
- Gallium scan
He thought that if this is tumefactive MS that they would most likely want to rescan her (MRI) monthly for a while to follow the progress of her lesion.
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We will be in Rochester, MN from the 20th through the 30th of December. – Will update as we can as we are there.
Thanks again for all the great support. We appreciate it.
Love you all,
Chris and Jen
Dec 7, 2010 – update on Dec 6 MRI and Dec 7 visit w/Dr. Yarnell
We’re making some progress here, getting closer to a diagnosis. I had my 4th MRI yesterday, and we met with Dr. Yarnell today. The lesion looks mostly the same, so they still believe it’s tumefactive MS. There is some enhancement around the outside which could indicate healing. When we asked Dr. Yarnell how confident he feels in the diagnosis, he said 80%. That was a relief to us.
Next steps: Dr. Yarnell called to introduce my case to Dr. John Corboy at the Rocky Mountain MS Center. Tomorrow I’ll call to make an appointment with him, hoping to get in as soon as possible. Dr. Yarnell also called in a referral for me with Dr. Brian Weinshenker at Mayo. Chris and I will be putting together a portfolio with all my scans and reports to mail to Mayo, and then we’ll see if I can get an appointment there.
My symptoms have mostly stabilized; some days are better than others, but overall I feel good. I still have deficiencies in my left arm and leg and some numbness in my face, but have figured out how to deal with it all. I went back to work last week, and am getting back to socializing and enjoying time with friends. I’m looking forward to talking to MS experts, hoping they can give me a better idea of what to expect going forward. That’s pretty much it for now.
Happy holidays, -jen
Nov. 23, 2010 – post-steroid treatments, post-visit w/ Dr. Yarnell – and all straight from the horse’s mouth:
Happy Thanksgiving week! It’s Jen here, happy to be back at a keyboard with improved typing abilities.
After last week’s near-biopsy, I returned home with an IV in my arm and a prescription for five days of twice-daily infusions of a high dose of steroids. We’re including a photo of me getting a dose. The smile may look a bit forced, but I was glad to be receiving meds to help me feel better. Chris went beyond his “in sickness and in health” vows, pushing saline and heparin through the line in addition to everything else.
I finished the steroids Sunday night. So far my symptoms continue to improve. I’m not back to 100%, but I’m adjusting my expectations as I go.
Today we returned to Dr. Yarnell, my neurologist. He performed the same strength and dexterity tests he has been doing all along, and agreed that I look much improved. Our next step is another MRI on December 6th, followed by another office visit with Dr. Yarnell on December 7th. He is staying with the tumefactive MS diagnosis unless and until something else materializes.
Since he is not an MS expert, at some point in the near future we expect to transition my care to someone who is. There are a couple of MS experts in Colorado. However, because this type of MS is rare, Dr. Yarnell recommends we consult national experts at the Mayo Clinic in Rochester, MN. Assuming things stay on track, we’ll contact the people he suggested and see if they are interested in getting involved.
The other very tricky thing about this in terms of next steps and treatment is that we don’t have a definitive diagnosis and MS does not take a predictable path. I will spare everyone the medical lesson, since there is so much to learn. I do want to share that I am getting my feet back underneath me, thanks to all the amazing support we have received from all of you.
Giving thanks today and every day,
-jen
Holy CRAP! – Cavalry to the rescue! – November 17 9:24 am!!!:
Leave it to Jen, with her love for Grey’s Anatomy, to pull out her own final episode cliff hanger!
Jen did NOT have the biopsy done today. She will instead have two large doses of steroid given to her intravenously today, will have a picc line installed, and then be given an additional 4 days of steroid doses at home with the help of a home care nurse who will stop by twice a day to administer the steroid treatments.
Here’s what happened:
- Jen got admitted at 6 am today.
- They got her prepped and ran her through the mapping MRI (including the little “cheerios” markers placed all over her head).
- She got back to her pre-op room at about 8:40.
- Dr. Levy came in to talk to her / answer final questions about the procedure, we met the nurses, etc.
- They all left.
- Jen and I freaked out a bit, cried, hugged, told each other we loved each other, etc.
- Dr. Yarnell came in and started checking Jen’s symptoms and said her strength, etc. were better (unchanged) from the last time he saw her.
- Dr. Yarnell’s phone rang.
- He answered it and was saying, “Well that’s really good news. Can you page Dr. Levy? – because he’s in the ICU ready to go to surgery.”, etc. etc.
- I didn’t think he was talking about Jen, but then he hung up and said, “Well that was the neuro-radiologist, Dr. Weiland (David) and he says that he has seen this type of thing before when he was at Johns Hopkins and that it looks like tumefactive MS“
- … Fast forward to Dr. Levy and Dr. Yarnell consulting for 20-30 minutes with Dr. Weiland.
- Dr. Levy and Dr. Yarnell come in to Jen’s room at 9:24 and begin telling us about this new development.
The new development:
- The lesion has not changed size from her previous scans.
- Her edema has increased in size which could explain her worsening symptoms
- When looking at her lesion with contrast, the outer ring shows up as a “C” shape.
- The opening of Jen’s “C” shape also faces her ventricle (center of the brain).
- These two features (the open “C” and facing the ventricle) are a possible indication of tumefactive MS.
- Most abscesses and tumors have an unbroken outer ring (“0” shape).
- Tumefactive MS is a rare form of MS that appears as a tumor in the brain.
- Due to the possibility that this could be a form of MS (this is NOT a definitive diagnosis), it is prudent to consider NOT doing the biopsy as the biopsy could cause complications that have nothing to do with her MS.
- So… we chose to wait and take option “B”.
Option B is:
- Get two doses (500 milligrams) of Solu-Medrol today in the hospital.
- Get two doses each day for the next 4 days at home.
- Follow up with Dr. Yarnell to see if her symptoms improve.
- Get a follow up MRI December 6th to see if the lesion has remained unchanged, shrunk, or gotten bigger (sound familiar)?
- Chances are VERY good that Jen’s symptoms will improve over the course of receiving these steroid treatments.
Possible outcomes:
- It still could show up later (Dec. 6th) as a tumor.
- It still could be lymphoma.
- If it were a lymphoma, the steroids could make it disappear completely (which is not good in itself, because the lymphoma would come back – and not have been treated “properly” with steroids AND chemotherapy).
- The chance (if it is lymphoma) of it coming back worse are minimal, though, and the treatment for it would be roughly the same as if we had done the biopsy today and discovered it was a lymphoma.
- It could continue to show up as MS with later attacks, etc. – but then at least we’d have a “definitive” diagnosis (eventually).
- It could be an MS attack and never show back up again.
Dr. Yarnell is in contact with folks at Johns Hopkins now to get more eyes looking at this thing to see if they concur with Dr. Weiland. In addition, he is also in contact with MS specialists here in town and at Johns Hopkins.
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As crazy as this all is, we would be quite happy with a diagnosis of MS as opposed to something like a tumor.
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Thanks all for your meditation / thoughts / prayers this morning at 9:30. – Maybe it was all of you that put the great vision in to Dr. Weiland’s head this morning. 🙂
New section – “Shoutouts” for those that help:
You’ll see a new tab at the top of this site – “Shoutouts”.
I was inspired to add it today as I took our two dead vacuums to be repaired at Wallace Vacuum and Sewing Chalet. Click on the link and read about it.
Jen will be on the 2nd floor of St. Anthony’s Hospital in neuro, in the ICU
Some of you have asked where Jen is going to be. She’ll be in St. Anthony’s Hospital on the neuro floor (2nd floor) in their ICU. – Not sure if she can receive flowers there, etc. – Please check with the hospital first. Here’s a link for them:
November 16, 2010 – talk w/ Dr. Levy in preparation for procedure
First, let me say thanks to all of you (again) for the great outpouring of love and encouragement. A lot of you have written directly to me and to Jen, and as much as we’d like to, it’s just too hard emotionally and time-wise to reply individually to you all. So let me say this to all of you – yes, we will probably need your help – and yes, we will not be shy in asking you for help. Thank you all.
Several of you have asked about being with me and Jen during the procedure tomorrow. – Jen and I haven’t decided yet if we are going to want to have anyone there, but if we do, we’ll contact you directly. Here’s why:
After talking with Dr. Levy last night (30 minutes), we know we are facing two crucial hurdles – 1) getting Jen through the procedure safely and 2) getting results back from the biopsy.
Getting Jen through the procedure safely / dangers, etc.:
- With any stereotactic biopsy there is the danger of infection, bleeding, and further damage.
- In Jen’s case, it is even higher due to the deep location of her lesion.
- So, brace yourself, here are the risks…
- Bleeding could occur that could be minimal and fairly “safe”.
- Bleeding could occur that could be fairly large and could cause a stroke.
- Bleeding could occur that could be a large hemorrhage which could cause coma and even death.
- Because of the area that her lesion is in, the biopsy needle itself could cause paralysis on her left side (Dr. Levy saw this happen only one other time in his many years of practice). This would be permanent paralysis.
- If we don’t do the biopsy, she is headed for paralysis on her left side anyway, so we have no other option we can take.
Here are the possible results:
- The lesion could turn out to be a cyst filled with pus. If that were the case, they would draw out as much as they could (to relieve Jen’s symptoms), get it off to the lab for analysis (bacterial), begin her on a very strong, broad dose of antibiotics until the test results would come back telling them specifically what we should be treating her for. – She would end up in the hospital (3-4 days) on IV until those results came back. After that, she would have a “pic” installed and would do IV solutions at home for 6-12 weeks. – This is the BEST scenario. Pray / hope / wish for this one.
- The lesion could be solid – and still could be an infection. Test results (3 days to a week) would tell us this as well.
- The lesion could be an MS calcification. Test results (3 days to a week) would tell us this. (BTW, because of the deep, isolated location of Jen’s lesion, it still could be MS even though her MS tests have come back negative. That’s because the contents of this lesion may never have had the chance to “mix” with her spinal fluid, blood, etc.) – This is a “not so bad” scenario. Pray / hope / wish for this one, if it’s not infection.
- The lesion could be lymphoma. Normally lymphoma is discovered in several locations in the brain, not just a single point. However, because Jen’s lesion is so small and because we have caught it fairly early, it could be the initial outbreak of lymphoma. Dr. Levy said they are having great success treating lymphoma with chemotherapy.
- The lesion could be solid – and could be a tumor. Test results (3 days to a week) would tell us if it is benign or malignant. This is the scenario we don’t want, so pray / hope / wish NOT for this one.
One other note – Jen and I still have “old-fashioned” cell phones. For those of you with the blackberries, iphones, etc. that can send long text messages, please don’t. We get up to 5 individual texts for the one you send and it is hard to decipher the message (we have to read it back to front).
Thanks again. Keep Jen in your thoughts. Love you all.
November 15, 2010 – Jen’s symptoms are worse, plans made for Wed. biopsy
Well, no two ways to put this – simply not good news. Jen’s symptoms got worse over the weekend. She has more weakness in her left hand, her left leg has gotten worse (difficulty walking, controlling her left leg, buckling, etc.). In addition, she has now developed some numbness in the left side of her face near her mouth, and she is having difficulty articulating certain words and has trouble with slurring.
We called Dr. Yarnell Sunday morning and he suggested that we call Dr. Levy this morning (Monday). – After some frustrating waiting, I finally got in touch with his nurse. Here’s what she was able to tell me, so I’m going to pass it on to you exactly as she told it to me:
- Dr. Levy is in surgery until 3 pm today.
- Dr. Yarnell is doing rounds this morning and may not be available until 2 pm today.
- They were hoping to get the results back from her few remaining tests before doing a biopsy.
- Her spinal fluid tests are back and show negative for oligoclonal “something or other” – this is a test for MS. Once again, doesn’t mean you can definitively rule out MS, but unlikely it is MS.
- Her multiple sclerosis “interpret” (or something) – shows 1 IgG unique band – which still interprets as negative for MS.
- Link with “some info” about the MS tests: http://onlinelibrary.wiley.com/doi/10.1002/ana.410130410/abstract
- Her antibodies, blood work, etc. – to test to see if she has an immune depressed system are coming back this afternoon / evening – and tomorrow (Tuesday).
- If she is having difficulty with her symptoms, she could start the steroids again. – The only downside to this is that it could impair the diagnosis for lymphoma. – Although Dr. Levy said the likelihood of lymphoma is “not high on the list.”
- They are scheduling her for stereotactic biopsy on Wednesday. – Better to schedule it and then cancel it if some of her remaining tests come back showing any reason not to biopsy.
So, my interpretation is that the reason we were “watching and waiting” is because they wanted to see these last tests before resorting to the biopsy (same story as below). – Now that some of the tests have come back negative for MS, they can rule that out “enough” to look elsewhere for causes. – If her blood work comes back showing she is immune depressed, then that could indicate that she could have been infected by a virus or bacteria, etc. (listeria?) – so, if you want to wish / pray for anything, wish / pray that those tests come back showing she’s immuno-depressed. Otherwise it’s likely it is a tumor and the biopsy is the correct way to proceed.
Shit.
November 11, 2010 – 8:30 am meeting w/ Dr. Desjardin, 9:30 am meeting w/ Dr. Yarnell, and 12:30 pm meeting w/ Dr. Bauleth
I have uploaded Jen’s MRIs AND her cat scans from St. Anthony’s in the “Sites and Files” section of this blog. – They’re zipped, but still very large. – So, if you are wanting to show any of her files to docs, radiologists, neuro’s, etc. – they can get the whole complete files here.
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So, Jen is collecting doctors like some people collect Franklin Mint.
Today she met with Infectious Disease Dr. Jeffrey A. DesJardin (former Wisconsinite, btw), Dr. Yarnell again, and Internal Medicine Dr. Diogo Bauleth.
Meeting w/ DesJardin:
Dr. DesJardin asked her all sorts of questions about her recent travel (April) to Peru, our year in Maui (’08 – 09), and our 3 week trek to Nepal (March ’08). In response to her answers, he has ordered specific tests to check for any exotic infections, viruses, etc. she might have picked up while on her travels.
Here’s a “thumbnail sketch” of his assessment so far:
- If people get brain abscesses, they tend to display more “dramatically”. She would likely have more infectious symptoms (fever, chills, sweats, vomiting, diarrhea, etc.)
- Travel means they look for parasites from S. America – but that hasn’t appeared on her CT scans
- Schistosomiasis (parasite) would likely display with more dramatic symptoms
- Paragonimiasis (parasitic infection) also would likely display with more dramatic symptoms
- Amoebic infections – would have displayed with diarrhea, vomiting, headache, fever, etc.
- They will do stool exams (Jen will be sending these in from home – 3 total)
- They are ordering blood work for more “exotic” possibilities, but these results will take a week or more to get results back
- Toxoplasmosis is something they will check for. – Looking it up on the web, I see that primary infections can have no symptoms. – Dr. DesJardin noted, however, that this likely would occur if she was immunosuppressive.
- They will also do an HIV test. – Likelihood is low, but not impossible.
- When Dianne (Jen’s mom) mentioned that she had eaten some pretty “rural” and exotic foods in Peru (including hand-made cheese – unpasteurized, etc.) – he came back in to the room (he was leaving at the time) and said, “so, tell me about this cheese.”
- Finally – in general, it will take a while to get the results back from these blood tests and from her stool sample tests.
- My take from the meeting with the doctor is that the chances of this “thing” being an infection are slim, but not impossible – even with the mild symptoms she is having.
Meeting w/ Yarnell:
Quote of the day:
“So far everything is normal – except you.” – Dr. Yarnell
The MS tests (EEG and vision response test) came back normal. (She had those tests just 3 hours prior to Dr. Yarnell coming to visit with us.)
Blood tests for immuno compromise still need to come back (2-3 days / 3-4 days / 4-5 days ?).
They did an ultrasound of her ovarian cyst (more on the results from that with Internal Medicine Dr. Bouleth below).
He scheduled her for a cervical MRI right before she left the hospital this day. – This would look for a lesion in her spine (“silent MS”). – When she did the test before we left, the technician told Jen that it came back negative. – No sign of MS in her spine. (We have not had the “official” assessment from Dr. Yarnell yet, though.)
He decided that we should keep her on Keppra – an anti-seizure medication. – The placement of her “lesion” / “whatever it is” doesn’t typically cause seizures, but he is keeping her on it as a precaution because a seizure would cause much more extensive damage / more edema / etc.
As per Jeff and Viveka’s question about “Schwanomma” – he said that that is a “nerve sheath tumor” – a tumor that forms around a bundle of nerves. – Jen’s tumor is a tumor of the brain. – So, nice try again J & V, but no cigar.
Meeting w/ Bouleth:
Per her ovarian cyst – ~ 3 cm’s. – Looks like a regular cyst. Next year at her annual, she should mention it to her gyn. – Maybe re-ultrasound to make sure everything is good, but seems like nothing to be concerned about.
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SO! – here we are again! – We still don’t know what it is.
None of the doctors are in a big hurry to go in and biopsy this thing because it is in such a sensitive area. – The hope is that one of these final blood tests / spinal fluid tests might reveal what it is.
If the tests don’t reveal anything, then they reveal something by the absence of all other things. – Which kind of makes sense.
So, here’s my take. – I may be wrong, but I’m trying to piece together what the docs are saying (and not saying).
The three choices so far have been:
- infection
- MS (or other demyelinating disease)
- tumor
So, if through these tests, we can eliminate infection or MS, then we’re looking at a tumor. – And the unfortunate thing for Jen in this case, is that it doesn’t even look much like a tumor on her scans.
That’s why we’d then be faced with (the only option to find out what “it” is) – to do a biopsy.
However! (and this is a big however), why would we risk doing MORE damage to Jen by doing a biopsy if her symptoms are progressing slowly? – Hence the possibility of the “wait and see” approach. – Have her get another MRI in one month and see if it has grown, shrunk, stayed the same, etc. – This is what all the doctors have referred to as having it “reveal itself” to us.
I know… maddening to think about, but a prudent approach to preserve Jen’s health.
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So yes… 🙂 – join us in this continuing journey of “I guess we’ll just wait and see what happens!”
Positive things to note:
- Dr. Yarnell has jumped on this thing with extreme urgency and fastidious exploration of all possibilities
- Jen’s symptoms are progressing slowly
- She has undergone TONS of tests – which are all showing us at least things it ISN’T – and that is as valuable as showing us things that it might be
- If it is a tumor, it’s not a death sentence. – There are great great GREAT therapies, treatments, etc. out there RIGHT NOW that can help us treat this thing (whatever it may be).
- In addition, every year gained with treatment would get us one year closer to treatments that are right on the horizon that are promising to practically cure brain cancers and tumors once and for all.
We are staying positive.
It IS extremely scary – and we are doing everything we can (tests, docs, internet research, etc. etc. etc.) to make sure we take the best approach to dealing with this thing.
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Want to do something to help? – Tell her how much you love her. – Send her a text. Leave her a phone message. Send her an email. – Send her pics of your kids doing something goofy. Tell her stupid jokes. – (Oh, which reminds me of how she and her mom absolutely LOST it cracking up at Dr. Yarnell mis-pronouncing Dr. Pooks name… – God how you Wisconsinites love your poop jokes!)
Thanks again for all the great vibes. We love you all.
– Chris
November 10, 2010 – 4:30 pm meeting w/ Dr. Yarnell
Well, it’s been a hell of a whirlwind day for our precious Jennie.
Here’s the tests they got taken care of today:
- blood draw for blood work
- cat scans of her head, chest, torso, and pelvis
- MRI
- MRS
- spinal tap w/ x-ray
- echocardiogram w/bubble
- breast exam
Oh, and also for those of you who may be wondering, Jen is not pregnant (guess my vasectomy wasn’t a good enough answer to have them pass on that test). 🙂
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So, let’s start with the best quote of the day. This one comes from Dr. Pook, general doctor here at St. Anthony’s. She did the breast exam on Jen, and will order up specific tests to be run on Jen’s blood work.
“All of the possibilities that Dr. Yarnell just described to you are treatable. You can put that concern right out of your head. Jen has still got a lot of living to do.”
(This response came after she asked me how I was doing – and I told her that Jen and I had remarked that wouldn’t it be ironic that we have lived our life like any day could be our last, and that now we could be facing that very prospect.)
Dr. Pook was very adamant that we can dismiss that possibility. She said we’ll figure this thing out and return Jen to the good ol’ Jen we all know and love.
So, that is AWESOME news that I know all of us have been waiting eagerly to hear.
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The other great news is that this is probably not a metastatic tumor (secondary tumor with cancer in another site in her body). The only thing her CT scans showed was a cyst on her right ovary which is very common in women and probably not a concern at all. (Dr. Pook said that if you scanned 100 random women, probably 50 of the would have a cyst – and that they come and go in women all the time.)
So that is even MORE good news!
…
It will take 2-3 days for some of the blood test results to come back – and 4-5 days for some of the MS-related blood tests too.
They wanted to do an EEG test today (tests for MS), but it requires Jen to sit up, and since she had the spinal tap, they can’t do that until tomorrow.
There is also some other test they will do to test for MS tomorrow as well. – Can’t remember the name of it, but it will test how quickly messages travel from her eyes to her brain.
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Now for the “well damn it!” part of the rest of the news:
Jen’s case is proving to be very very very unique.
Jen’s results have been reviewed by Dr. Yarnell, Dr. Levy, two other neurologists (colleagues of Dr. Yarnell), Dr. Pook (general), and she also will be seen by the infectious disease doctor either tonight or tomorrow. – The infectious disease doctor will also order additional tests based upon Jen’s world travels.
The main thing is… we still don’t know what is going on.
It still could be:
- an infection
- MS or some other demyelinating disease
- a tumor (could be lymphoma?) – it doesn’t look like a glioma on the scan
- the MRS was inconclusive (not positive) – so that indicates that whatever “it” is is probably not malignant
There are still other tests that can be done / will be done with her blood work and with her spinal fluid (they took a lot) – so they may still find something there.
If we don’t find something conclusive, then they may want to do the biopsy. – Or not… – Jen’s 2nd MRI today showed that her scans have not changed much at all, so her condition isn’t changing quickly.
…
Jeff and Viveka sent an interesting email / text today wondering about “prion”-type infections. – We mentioned it to Dr. Yarnell and he said that her scans don’t show anything like that. – Her scans would look entirely different if that were the case.
Also, the CT of her head helped rule out the possibility of a worm in her brain (yes, they occur in people from Latin countries).
…
So, there you go… – pull out your medical journals, dust off your laptops and get those google searches going again. – Maybe one of you can decipher what is going on with our lovely Jen.
She is fine, by the way. – She endured the day of tests like a trooper. She appreciates all the texts, emails, and messages – so keep them coming.
Lord knows we’ve always known Jen was unique – now the medical community knows it too. 🙂
November 9, 2010 – St. Anthony’s for tests for 2-3 days
All right, I’ll tell you all exactly what I told Jen:
There’s no need to panic and get overly upset. We knew all along that we would be doing these tests. – It’s the only way that we can narrow down what is going on.
…
We met with Jen’s neurologist today – Dr. Phillip Yarnell – father of our good friend Elizabeth Yarnell.
First, a little background on Dr. Yarnell: When we were in a panic in NY in the emergency room, I contacted Elizabeth Yarnell because I knew that her father was a neurologist. – Bless her heart (and her father’s heart) – they got me in contact with him in a matter of minutes. – I was able to tell him what was going (with the little bit of info that I knew) – and he helped me understand what was going on – and what we would need to do test-wise when we got back to Colorado.
And now that we are back in Colorado, we have met with him and he has recommended that Jen be admitted tomorrow morning to St. Anthony’s in Denver. – That way we can get the tests done much quicker and also have her in a hospital environment in case her symptoms got worse suddenly.
His main concern is that the growth / mass / whatever it is – is very near the ventrical in her brain. – If this thing isn’t a tumor and could burst – if it got in to the ventrical – let’s just say that wouldn’t be good.
Jen’s neurosurgeon, Dr. Rajpal also spoke with Jen by phone today too and recommended that she get all of these tests done ASAP.
The tests she is going to get will help us determine if this “thing” is perhaps an infection, perhaps a secondary tumor (cancer in some other part of her body), or if perhaps she even has vegetation (?!) in her heart which would indicate infection, etc. – that could have been passed on to her brain.
So, the possibilities so far for what this thing is are:
- tumor (primary) – meaning it’s the only one and originated in the brain
- tumor (secondary) – meaning there’s another site of cancer in her body and the one in her brain is “secondary” to the first (originating) site
- stroke w/ dimension
- infection (encapsulated listeria?)
- MS plaque (multiple sclerosis – but with the appearance of a tumor)
- could even be a rare exotic disease she contracted in Peru
The tests she will be receiving:
- blood tests to check for infection
- cat scans of chest, abdomen, and pelvis
- echocardiogram
It will probably take 2-3 days to get all the results.
If all of the tests come back negative – then we are left with the prospect of getting a biopsy of the thing, which would require the insertion of a long hollow needle in to Jen’s brain to get pieces of the thing. – That procedure carries its own level of risks, so we will cross that bridge when we get there.
…
All in all, this is a positive sign. – We will be getting more information about what this thing either is or isn’t.
Keep Jen in your thoughts, prayers, etc. – We all can feel the loving vibes.
BTW, I’ve finally updated my phone and Jen’s to be able to send and receive up to 250 texts per month without additional charge – so feel free to send your loving texts to Jen.
If you need to get in touch, call Chris’s cell phone first. – If you don’t know the number, drop me (Chris) an email.
November 3, 2010 (update from Jen)
Hi all,
First, thank you all for your amazing outpouring of love, good vibes, and offers to help in every way imaginable. I’m overwhelmed by your generosity and quick response, and the power and speed of the internet connection!
I never thought I’d be saying this, but I have a neurosurgeon, Dr. Rajpaul in Lafayette. Chris, Ellie and I met with him today.
Chris’s typing is faster than mine these days, and he has synthesized everything beautifully, so here’s his summary:
~~~~~~~~~~~~~
What (little) we know about it:
1) There’s a small (1cm) growth in a “high real estate” area – the homunculus – lots of brain fibers and body functionality flow through that area. If it were in a less concentrated area, it would be a no-brainer (so to speak), they would do surgery and remove it. Since it is in such a sensitive area, the potential for doing damage with surgery is very likely. – So although surgery isn’t out of the question, it is highly unlikely.
2) They still don’t know what it is. Based on Jen’s age and location, there is a high probability that it is a low-grade glioma. – Although not great, normally, that’s a better-than-normal sign, because it would be low-grade. – But if you put a low-grade tumor in a “high real estate area” (like the homunculus), that’s not great either (enjoying the nebulousness of this so far?). 🙂
3) It could be an infection.
4) It could have been caused by her recent trip to Peru (infection).
5) It could be MS.
Our options:
1) Insert a long hollow needle and get pieces of it for a biopsy so we know what we’re dealing with.
2) Wait a month, MRI it again and see if it has changed.
Other things going on:
1) Our neurosurgeon meets regularly with a “Tumor Board” (sound like a load of laughs, doesn’t it?) of area neurosurgeons and neurologists to discuss cases and get feedback from other professionals in the area. – They will review Jen’s films on the 11th and we will talk with her doc on the 12th. They may all conclude that it would be best to go ahead with the biopsy as opposed to waiting a month.
Jen’s meds and what they were intended to do:
1) Jen has been on a high dose of steroids. These steroids are designed to reduce the amount of edema that has appeared around this “growth” or whatever it is. – Edema is extra fluid in the brain. It could be the edema that is causing Jen’s symptoms or the growth / tumor itself that is causing the symptoms.
What we’ve decided (based on our discussion w/ the doc):
1) Have Jen stop taking the steroids. – If her symptoms get worse, it might indicate that her symptoms have been caused by the increase in edema. That would give us another clue as to what is going on. – Also, if her symptoms get worse, we call the doc immediately, get another MRI and see what is going on.
2) Wait until we hear what the Tumor Board recommends.
3) Wait a month, get a 2nd MRI, meet with our doc and see what (if anything has changed).
Here’s what we may discover by waiting a month:
1) The image on the scan could shrink. – If it shrinks, it could be MS or it could be an infection.
2) The image could grow. That would also give them more hints as to what it is. – More than likely a biopsy would occur at that time.
3) By the way, the reason you wait on doing a biopsy – sticking a hollow needle in to someone’s brain is not exactly without risks.
4) The image may not change at all. That means that this thing may have been in Jen’s brain for a LONG time. – At that point, who knows? – Maybe we’d be looking at a long series of monthly MRIs watching this thing and trying to figure out what the next steps should be.
Chris’s favorite quotes from the doc:
– “It’s definitely a concern.” (duh)
– “This is what I’d do if it were a member of my own family” (waiting the month and having another MRI)
(BTW, I really like this doc.)
~~~~~~~~~~~~~~
So, we’re going to take the rest of the week off, then go back to work for the next month at least, and see what happens next. I still have a loss of dexterity in my left arm and hand, which means slow typing, bad penmanship, and switching to my right hand once in awhile. (God forbid I should end up right-handed out of this. Good grief!) but I’m getting used to it. My speech is also slightly delayed, but maybe that’s not such a bad thing!
My mom is coming out this weekend. She was prepared for anything, and now she gets to help with things like yard work and house cleanup instead of spending time in a hospital. Yahoo!
Chris is setting up a blog and we’ll send you a link so you can read it when you feel like it. There may not be much up there over the next month, but we do have some images for those of you who like to see that kind of thing.
Thanks again for everything. All the love that’s out there is already helping the healing. I can feel it.
-jen (and chris)
Thanks guys for the wealth of info…. helps alot….sending positive thoughts out west.
Lots of love and hugs from the east coast….xxoo
David
Sending love and prayers your way.
It always feels better to DO something rather than sit around and wait for something to happen, I think. At least you will get a better idea of what to do next to kick this thing in the ass.
We’re all rooting for ya’.
You are not alone…may the peace that passes all understanding fill you Jen…we love you and are praying for you…Dagni…signing in for all the simonson clan
Thank you so much for the update. I am praying for you guys. Be strong Jen, you can get through this!! Lova ya!
Misty
Jen & Chris,
We have you in our thoughts and prayers here in Omaha. If there is anything you need, we are here for you.
Mike
Jen, I love you lots and you have been a constant on my mind and in my heart. My thoughts and prayers are with you and your family.
Hi Jennifer and Chris,
I work with Jennifer’s Mom, Dianne, and I just wanted to send my prayers to you. I hear so many good things about you and all of your adventures, I feel as though I know you and we haven’t even met! I know you have been in a whirlwind the past week with all the changes taking place. I hope that with the outcome of these tests, you are able to find your way through this challenge. The doctors are the experts and will be able to provide you with direction. You are young, strong and healthy….and most of all, have a wonderful family to suport you!
I’ll be thinking of you all…
Sara Pochanayon
Hi Chris and Jen,
Will follow the progress from this site. You are both in my thoughts constantly and sending blessings many times a day!
Shalom
Appreciate the update so much, thinking of you constantly. Have everyone here praying for both of you. Stay strong and positive. Love you, mom hansen
Jen and Chris, Wishing you both strength and Humor to deal with this! I know both of you are strong and funny so you have half the battle won! Keep the faith, be positive and lean on your friends. For what you need, and what we can give, we will! xoxotuke
You are a unique lil one, but I already knew that. We appreciate all the updates, but hope Chris is getting some rest too! Can’t wait to hear more good news!
Prayers and great vibes being sent from Greeley….thanks for the info! Hang in there guys..I cant imagine how tough this is…I imagine the not knowing is the worst. Best Wishes!!!
ok Kurtz….good to have details. Gonna send you a note btwn d&d friends. xxooo Roomie
Thanks for the updates..I appreciate hearing.
I’m sending all the hope and positive energy I can your way Jen. It’s good there is NOT specific bad news, because there may not be any!!
Keep living with joy and hope.
David
Thinking of you guys daily! If you need a good laugh, I find the double rainbow you tube video always gets me going.
Lots of love,
Sophie
I’ll tell you about that cheese!!!
Hey Jen,
Thinking of you and your family a lot with Thanksgiving coming and all. I was trying to think of things about your dad and what I remember from coming up north. One of the biggest things that I still remember was your dad asking me if I wanted to clean between his toes for a dime! I was really grossed out by that but you just came over and did it cuz you always did. We sure have one screwed up family! But the thing I know is, they are always there for each other and your dad always made me laugh – at least he did as soon as I was old enough to understand his humor! You have a lot of him and the strength of your mom in you and I know you will be OK!
Praying for a quick diagnosis and speedy healing. You have a great support system. Let their love lift you and keep you at peace.
Greta and Jack
Jen, I am giving you a virtual hug!! Chris, thanks for all the detail – it sounds like such a steep learning curve and an emotional roller coaster. You are so strong in spirit, both of you, and that’s the home field advantage 🙂 Will send another favorite poem/quote, since I feel like my own words fall short:
So Every Day
So every day
I was surrounded by the beautiful crying forth
of the ideas of God.
one of which was you.
(author unknown to me – but I liked it!)
Much love from Chris, Thanh (and Lucas and Anna)
We continue to pray for all of you. Donna
Jen, you have done so much for me over the years and you’re the best mother a son could ask for. I have made peace with the fact that I’m not the easiest person to deal with in the world, but I hope you know that I have always pledged my undying love and support to you. So, as a son to a mother, I ask you to: let me be a light in your dark places, let me be Atlas to your Earth, and let me be the eye of your storm. Anything you need, I’m there.
Love Jamie
P.S. Yes, I’ll even pick up dog poop. 🙂
Thinking and praying for you all. Thanks Chris, for the updates! OXOXOX
Thinking and praying for you all! Thanks Chris, for the updates. XOXOX
Chris, you are a wonderfully detailed person and are doing a good job keeping us all up to date. I will be praying for good results during the biopsy tomorrow.
Sara Pochanayon
Chris & Jen,
Hugs, kisses, love and prayers for the best case scenario. More hugs, kisses, love and prayers for a safe and successful procedure tomorrow.
xo
Laura
Praying for pus with all my might! And a boring uncomplicated procedure! Love you!
Jen, It’s hard to know what could help – but our friend Lynn came up with something. Alisa, Lynn and I are going to stop/pause whatever we’re doing and sit in prayer and/or meditation as you go in for the biopsy tomorrow. Energy will be directed toward you and the people caring for you and they are going to wonder how there could be so much positive energy surrounding you. Hopefully it won’t short circut any electrical equipment (smile) – but it just might because it will be powerful!
“Shit” about covers it. Of course we’re pulling for you both and praying they find nothing in Jen’s brain… as we’ve always suspected.
If there’s anything we can do yadda yadda yadda but KNOW this is true. We’re on 36 the moment you call. Love you both and wanting SO HARD for the best possible outcome.
Love,
Drew and Nic
Ok, I had all my hope in this cheese theory. Cheese denial if you will.
Jen–you are one of my greatest inspirations.
In college—your dedication and math abilities always kept me studying and trying.
Your self discipline and ability to stick to a plan (no sugar) is unmatched and something I talk about with my kids all the time.
Your ability to throw caution to the wind and have fun (marrying Chris–sneaking onto tour buses) will keep me in the story business for a long time.
But most of all–you inspire me to live life to the fullest every day. Tomorrow you will be in my thoughts all day and I will save you some turkey from the school Thanksgiving lunch :). I love you always. Chris–please call or update when you can. I am downtown all day so please let me know if I can come see you, Diane or Jen. You know how snoopy and pushy I am–you can’t keep me away! Love, Nic
Hi Jen & Chris,
I’m a good friend of Liza’s here in Milwaukee and have been following your situation. Just know my thoughts and prayers are with you today. With all of our positive vibes flowing, it’s bound to be a good outcome.
All our best,
Nancy
Hang in there you little rat. Love you. Darcy (Hoefner) Rose
Hi Jen, this website isn’t letting me call you a little rat. So I will have to re-phrase it…. “Hang in there you little sweetheart”. There, now maybe it will be acceptable. 🙂
What great news you have today! I am sure you are all taking a big sigh of relief! MS is certainly treatable, so we will all keep our fingers crossed that this is the final diagnosis!
Hang in there,
Sara Pochanayon
Whew… I’ve been thinking about you all day, Drinking my Latte, at spinning class, in the shower (ew… Kinda kinky) driving to work, at work… All my thoughts of you told me everything was going to work out well! So good to hear this news! Love you sweetie! Keep the faith. The medical world ,and what they can do, is Amazing!!! Xoxotukes
Friends we are…
I had just thought of you this week and our Cottey get together in Nederland last year… and how we spoke about work and content development. I am currently working on a project and thought about reaching out to you on methodologies…
Interesting on how the universe works…
Sending you many positive wishes, prayers and Cottey love your way.
ducks and daisies!
Hi Jen,
Well I’m glad you found out some answers today. It is SO frustrating to NOT know what’s going on. My husband has MS (he was diagnosed in 2000). The steriods will truly help, not fun…but helpful. Thinking about you…keep your beautiful chin up!
Much love, Kathy
The greatest healing therapy is friendship and love.
— Hubert Humphrey
(You have AMAZING amounts of both)
I worried about this all day. I am glad that there is a new and perhaps better/less invasive option. I love you Jen and will continue my prayers. I sure feel helpless so far away. I will try hard not to show up on your doorstep and distract you from resting and getting better.
Thank you soo much Chris for such good detail on what is going on! If you two are happy with that, so am I. (not that your happy, but glad its not the WORST thing.) Keep us posted. Your doing a great job. I wish we lived closer so we could be there! How long will she be in the hospital for? 4 days?
Misty
Just wanted to wish you both a Happy Thanksgiving! I wish you were able to join all of us! Thinking of you guys daily!
Jen and Chris
How goes the steroid treatments? Thinking about you both daily and hoping that all is going better for you. Love you both and hope you’ll have a nice Thanksgiving.
Love Julie and Burt
Jen:
Love the ‘comfy chair’…. you look fantastic. Have a great thanksgiving – means so much this year…..wish we could share it with you.
Love ya,
David and the gang (Sophie, Nick, Ophelia and Toulouse)
I agree with Dave–You look great. I also wish we were there to share the day with you. Have a great Thanksgiving. Love ya.
Burt and Julie and gang
So good to see you and hear from you my friend! I won’t be truly happy til I see you on the tennis court, whacking balls like you do, but I know, one step at a time. I am Thankful to see you smiling and in a chair for now. Have a Great Thanksgiving and give your wonderful Husband a hug for me! He has been awesome delivering all your news! We all have so much to be Thankful for! Xoxotukes
so good to hear you are feeling better..
happy thanksgiving xxx alisa and sandro
Glad you are feeling better–and you could do a lot worse than the Mayo!! You may remember I lived near there and it is a great place. People from all over the world go there and you aren’t far from you mom. Keep up the updates and keep getting better! Love you Lots….Nicole
Jen, It sounds like good news to me.. I am praying that Dr. Yarnell’s 80 % opinion that you are healing up is correct.. You guys are getting the best help and it sound like you are making good progress. … you are going back to work and hanging with your friends. I am happy for you and chris. I wanted to tell you a cute story.. Quincy was saying how much he wanted to move back to Boulder because he misses the swing in your back yard… Those kids are so precious..I sure hope that you will be visiting us in WARM Maui soon. xooxxoxo, shelly
Looking wonderful Jen! Glad to hear you’re getting closer to a diagnosis. I’ve been checking this blog daily…so I’m thankful for an update!
Love you!
-Soph
Yeah!!! Now we can get together. May have to wait until after Dec. 25–are you free between Christmas and New Years?