Update: May 6: I’m doing a bit of spring cleaning here. Updates are now on the front page. If you’re looking for the latest, go there now.
April 7, 2011 – All’s well
Yes, it’s been awhile since I updated. Friends who were getting their updates here are now just calling me saying, “What’s up, Kurtz?” So, for the record, here it is in writing.
I’ve been steadily improving, slowly regaining my functionality. Recent milestones include a tandem bikeride with Chris a couple of weeks ago; walking without a cane all the time, and without an ankle brace most of the time; swimming the front crawl, breast stroke and back stroke; balancing on my left leg while getting dressed; two-handed typing almost all the time, and occasionally mousing with my left hand. This recovery business is taking A LOT longer than I’d like, but I’m doing my best to be patient. (Most of the time, anyway. I still have days where I sort of crumble in a heap and raise the white flag, but that happens less frequently now.)
A day in the life
My weekly routine includes about 15-20 hours of billable work, two to three sessions of therapy (physical and mental), almost daily walks around the neighborhood with the dog, a lot of at home physical therapy on my own, the occasional trip to the gym, and daily naps. I was telling a friend that it’s hard to admit I only work part-time, as that’s just not how I see myself. Then I added up all the time I’m spending on rehab work and realized I’m still working full-time, just in different ways (yes, naps and walking the dog now count as work).
What the doctor says
Chris and I met with Dr. Corboy a couple of weeks ago. There was some consideration as to whether it makes sense for me to start taking medicine to prevent future attacks. We were thrilled to hear that Corboy doesn’t think I need anything at this point. He conferred with Dr. Weinshenker of the Mayo Clinic in Rochester (the doc I saw in December), and Dr. Weinshenker agreed with the plan. If I wanted to take something just to be on the safe side, I could do that at any point. But for now, since I only have the one — albeit giant, only one — lesion, we’re going to just wait and see what happens. My next scan is in May, and I’ll continue to have regular follow-ups with the doctor so he can track my progress. The chemo treatment I had in January is still in my system and will be for a couple more months. Since Balo’s concentric sclerosis is so rare, they don’t have any statistics to tell me what to expect. I’ll continue blazing the trail for those who get diagnosed in the future.
Food is medicine
Although I’m not taking any prescribed meds, I am modifying my diet per the MS literature I’ve read. Sort of. I got to the point where I read so many “eliminate these foods” and “focus on these foods” lists that they started to cancel each other out. I’m learning that there’s lots of good advice about what to eat and what to avoid, and then there’s just tuning in to what’s happening with my body. I’m working with our friend Elizabeth Yarnell to find out my food sensitivities. I believe that will help me prevent future attacks. It’s working for her and many others with MS, so it’s worth a shot!
Areas for improvement
I’ll take a moment to record some of the things that still try my patience, so on my next update I can report progress (there are good days and bad days on all of these): being physically exhausted at the end of most days, the tremor in my shoulder that makes my entire arm shake slightly when I extend it, the weakness on the outside of my ankle which means my foot doesn’t plant flat on the ground, the weakness in my foot muscles that makes it hard to balance or shift my weight (very important for tennis).
Overall, the trend is upward, and that’s a great relief. I feel good about improving my nutrition and increasing my level of exercise. I still don’t get to know what the future holds regarding this disease, but I feel like I have a better grasp on today and that helps. As for my strength issues, my physical therapist says the connections from my brain to my muscles are all happening, so it’s just a matter of continuing to work them.
A couple of months ago I agreed to attend my friend Ellie’s 50th birthday celebration in Glenwood Springs next weekend. At the time, I didn’t know if I’d be going to Glenwood with a walker, a cane, or (if I had another attack) a wheelchair. I’m happy to report that I’m ready to stroll, swim, soak, and relax with all the fabulous women who will be there. Now that’s progress!
February 6, 2011 – lots to celebrate
I’ve been home just over three weeks and we have plenty to celebrate. The day I arrived home, Chris had to carry me up the stairs. Since then I have progressed from using a walker with supervision, to using it solo, to using a cane, to mostly walking around on my own in our house. My gait still needs work, and my foot still doesn’t completely get off the ground the way it’s supposed to, but the treatments definitely worked, and are still working. Last weekend I started losing my hair, which is sort of a bummer, but I’m taking it as a sign that the chemo is still doing its stuff, and that’s good. I’m even typing this two-handed, which is another great milestone, especially at this time of night.
In the past couple of weeks I’ve been for a walk down our street, walked a bit on a trail, went to a movie, went to dinner twice, and went shopping. This is all big stuff for me. I’m also working a little, but trying to keep the focus on doing my exercises, getting rest, and keeping stress to a minimum (easier said than done).
One of last week’s dinners was with two Boulder guys who have tumefactive MS (what the docs thought I had before it turned into Balo’s concentric sclerosis). These two weren’t as lucky as I was – they underwent brain surgery before they were correctly diagnosed. Yes, tumefactive MS is rare, but apparently Boulder is full of extraordinary people. It was interesting to share our experiences and to note the similarities in our personalities – we’re all overachievers, superheroes, etc. At least, we thought that’s what we were supposed to be until our bodies gave us non-negotiable indications to slow down. Surprisingly, we’re all married to people who are generally laid back and relaxed. Coincidence?
This coming week I have another MRI. We’re hoping the lesion is smaller and that it is not fluorescing, because that means the attack has stopped and healing can resume. I also start physical therapy at Mapleton Rehab Center in Boulder. I’m really looking forward to that. I have two appointments next week and three per week after that, for the next five weeks, alternating pool and land therapy. I’ll continue beyond that as needed. Should be good.
Finally, as if everyone isn’t already celebrating this, let’s not forget that THE PACKERS WON THE SUPERBOWL!!
January 17, 2011 – back at home
I’m back at home, after a hellish week in the hospital. All those treatments that sounded so reasonable when the doctors described them to me turned out to be brutal. Plasma replacement therapy (a.k.a. plasmapheresis): no small event, even though all I had to do was lie there for a little over an hour each day while the machines did the work.
That is, until I had a reaction on Tuesday during treatment #4 and felt like I was on an endless spinning teacup ride from hell. It was small comfort that the technicians, doctors, and EKG team all rapidly assembled and frantically tried to figure out what was happening and how to stop it. Poor Chris had to sit there and watch and hope that all the king’s horses and all the king’s men could put me back together again.
Back in my room, I purged what was left of my Chipotle burrito and remained in the fetal position for the next four hours. Eventually I got to the point where I could open my eyes without feeling nauseated, but it took another couple of hours before I was willing to turn my head or speak in complete sentences.
When I finally had my wits about me, I declared that although the plan was to do five treatments, four would be sufficient for me. (If everything else about my case is unique, why not customize the treatment too?) The docs weren’t immediately on board with my request, but conceded that it would be okay to move on to the second part of the plan, a single dose of chemo, called cytoxan. I begged for and was granted a day of rest on Wednesday. My body and psyche needed a day to recover.
I was apprehensive about all that surrounded the chemo treatment – foley catheter, a couple hours of flushing my kidneys before and after the treatment, anti-nausea meds, and an hour-long infusion of the toxic chemotherapy goodness. It all went fine, though, and I was glad to get the bad-ass medicine working on shutting down the attack on my brain. On Friday they removed all the tubes and tape and sent me home.
The weekend was rough, starting with Chris carrying me up the stairs on his back and depositing me in bed. All the hospital staff prepared me to feel crappy for a few days after the chemo, and they were right. My brother Jeff, sister Julie, and Chris were on standby every waking and sleeping moment to get me whatever I needed, escort me from the chair to the bathroom to bed, to just agree “this really sucks,” and to encourage me that it was going to get better.
Which brings me to Monday morning. It’s getting better. I’ve already been up for two hours without a nap. I sat at the table and enjoyed oatmeal and coffee with Julie. Later today I’ll start in-home physical therapy and by the end of the week I hope to be working again. I anticipate I’ll be doing a lot of work with occupational and physical therapy in the weeks to come. We’ll monitor my progress, do another MRI in a month, and see how it goes.
January 10, 2011 – Jen ends up in hospital for plasma replacement therapy and to finish out her steroid treatment:
By the time Jen’s PET scan appointment rolled around Friday morning, it was apparent that someone from neurology / the MS center needed to see her. She was no longer able to walk without assistance (even with her walker) and it was necessary for me to be with her at all times and help her with pretty much all of her tasks.
I put a call in to the on-call neurologist at 4:30 am and coordinated having them take a look at her down at radiology before she went in for the PET scan, which was scheduled for 7 a.m.
The doctor met us there, checked her, and confirmed that her symptoms had indeed progressed quite a bit. He told us that he had been in touch with Dr. Corboy and that they would be admit her to the hospital to begin the plasma replacement therapy. She would finish out her steroids in the hospital by Sunday (that was yesterday, so they are all done now), and would finish out her plasma replacement therapy by Wednesday (5 treatments over 6 days).
Her PET scan came back negative – meaning she has no signs of cancer in other parts of her body. This was to rule out some type of lymphoma. – So we are now left with two possibilities: a glioma or Balo’s Concentric Sclerosis. – The doctors are still leaning towards the Balo’s diagnosis, which (although a malignant form of MS and VERY aggressive) is a very good sign for Jen, in that she has a very good chance of recovering completely from this attack, although her progress will come slowly over the course of several months to a year.
When I asked her doctor for a prognosis for the Balo’s diagnosis, I said (literally): “Will she be able to grow old and gray with me?” – and he replied, “This is completely treatable. I see no reason why this would have any impact on the length of her life.” !!! – Which, of course is AMAZING to hear!
One concern, however, is that due to the severity and extreme descent of her condition, they are still concerned that this could be a glioma (tumor) – less likely than the Balo’s diagnosis, but still a possibility.
In order to rule that out, they can do one of two things:
- Do a brain biopsy
- Treat her with Cytoxan with a single dose to halt the attack
Here is a great article about how Cytoxan (a chemotherapy drug) can halt MS attacks:
Dr. Vollmer is leaning towards using the Cytoxan treatment as opposed to doing the biopsy.
Which leads me to this:
Jen is currently being seen by the two biggest, baddest mo-fo’s in the MS treatment universe: Dr. Corboy and Dr. Vollmer. – It would be like getting private basketball lessons from Michael Jordan and Larry Bird simultaneously.
Here are their amazing bios:
If you are like me, and you do additional research in to Jen’s disease and her prognosis (with our good friend Google), please keep this VERY IMPORTANT item in mind:
Jen may have Balo’s Concentric Sclerosis, which is a variation of a form of malignant MS. In this “family” of malignant MS’s, there is also: tumefactive MS, Marburg variation, etc. – If you look up information about this family of malignant MS’s (especially including Marburg), you will see without exception, across the board, an indication that this is fatal disease. – When I asked Dr. Vollmer about this, I said (literally), “If she gets another attack in the future, then it’s considered Marburg’s and it is eventually fatal, is that correct?” – and his reply was, “Not anymore.” !!!
So yes… it is STILL very scary… very VERY scary and DAMN IT! so frickin’ debilitating and hard on Jen! – but she is doing fine, and between the necessary and much needed “cry fests” we have daily, she sucks it up and struggles through the exercises that will eventually bring her functionality back – and more likely than not, she will never see another attack like this EVER AGAIN in her lifetime!
So, keep her in your thoughts and prayers. As you all know, she is SO worthy of them all!
And now, Jen’s own entry:
When I was at the Mayo clinic in December, a nurse told me I didn’t need to monitor my progress hourly because I would know when things changed. Boy, was she right. I can’t believe I was at the gym doing yoga with my friend Judi a week ago.
Fast forward to last week. As of Wednesday, the plan was to start steroids, get a PET scan Friday morning, wait a week to see how well the steroids worked, and decide if I needed plasma replacement therapy. Plans changed as my symptoms rapidly declined Wednesday through Friday.
Today was the last day of the five-day steroid treatment and day three at University Hospital. By the time I came in for the PET scan Friday morning, I couldn’t even use a walker without assistance. They admitted me for inpatient treatment and started the plasma replacement therapy. I’ve had two treatments so far, with three more to go. That part is going well. I’ve been getting daily checkups with Dr. Vollmer and other docs, students, nurses, and physical therapists. Even though progress is slow, I am showing improvement. (I had to use my right arm to lift my left arm over my head, but I was able to cheer for all the Packer touchdowns today!)
So, how are the days here? I have exercises to do “10 times an hour, every hour, while awake” (that detail is key). Plus, I have nurses checking on me, daily plasma treatments, google video chatting with my brother, naps, meals, and an occasional shower. As Calvin would say, “The days are just packed.”
On Wednesday they’ll decide what’s next. I may have one round of a chemo treatment to stop the demyelinating attack (they’re still trying to confirm that’s what’s going on), and then wait a month to see if that does the trick. After that I may start interferon for a year to prevent future attacks.
The mystery continues to unfold. The good news is, I feel like I’m getting excellent care from people who are dedicating their careers to studying and treating this.
In addition to Chris’s unfailing attention, I’ve spent the weekend blessed by the company of Liza, Ellie, Judi, and Bob. In spite of this surreal experience, I am acutely aware of how fortunate I am to have this wave of love to ride.
January 6, 2011:
This is by far the hardest blog entry I’ve had to do since this ordeal with Jen began, and I’m afraid I won’t be making any jokes or funny remarks in this one.
The first and foremost reason I am updating this blog is so that you can keep Jen in your thoughts and prayers and send us all the healing powers you can muster. – I also know that it helps her tremendously to hear from you all – mostly by email, because talking in person can be so emotional (and draining) for her. – If you do, however, want to reach out to her by phone, please do so. If she (or I) am not in the mood to talk, we simply won’t answer – and will try to get back to you later. Email us if you need her cell number. Also, as a reminder, if you send her texts, please keep them short as our phones are antiques and can’t handle the mega-length iPhone-style messages.
Friday, Saturday and Sunday of this last week were very uplifting days for Jen and me. In the mornings, she was waking up with improved symptoms (at about 90% capacity, she thought), and even though her symptoms would worsen in the afternoon, we thought it was the first signs of perhaps the end of this first MS attack. She even attended a yoga class on Sunday morning and was feeling great!
Then, Monday and Tuesday things took a turn for the worse. And much worse. By Tuesday she could not walk without assistance from me. She now can only get around with the use of a walker and she is typing pretty much with only one hand (her right).
Luckily we were able to get in and see Dr. Corboy on Tuesday because of a cancellation that day. They examined her and noted how much worse her symptoms had gotten and scheduled her for an immediate MRI that evening.
They also put in place a plan to have a home health nurse come by and set Jen up with steroid injections again (starting yesterday – Wednesday). (SoluMedrol 1 gram per day.) She had her first infusion last night and will continue with them for 5 days.
Hopefully these steroid treatments will help her drastically like they did the first time and she can finally find some relief. – Dr. Corboy did say that if the steroids don’t work, that they would then move to treating her with a 10 day stay in the hospital where she would receive plasma replacement therapy every other day (5 times).
Dr. Corboy called us the next day (Wednesday) and told us that her lesion had enlarged and now had “tree-like” rings, concentric circles, etc. – basically making her lesion look like a target. The rings indicate areas of demyelination separated by areas of no demyelination.
He scheduled her for a PET scan on Friday. The PET scan is designed to look for cancer in her body. – Some of you probably remember that she has already had a CAT scan of her body to look for cancer, but this scan is much more sensitive and can find things that the CAT scan could have missed. – Dr. Corboy is doing this to rule out the possibility of lymphoma that may be occurring elsewhere in her body (which would mean that the lesion in her brain would also be lymphoma).
If the PET scan comes back clear, then he would feel “fairly confident” in diagnosing her with an even more rare form of MS called “Balo’s Concentric Sclerosis”.
To give you an idea how rare this form of MS is, consider this example:
- Take the total cases of MS in the US (between 250,000 and 350,000 people are currently diagnosed with MS).
- Remove 99% of them (who have “run of the mill” MS). That 1% is 2500.
- Of that 2500, remove 90% of those cases – as they will be Neuromyeltis optica or NMO – a rare disorder of its own. So that now leaves 250 cases.
- Those 250 cases are composed of 4 rare types of MS, of which Balo’s Concentric Sclerosis (BCS) is one. – So divide that by 4 and you have 62.5 cases.
- So out of the MS “universe” of 250,000 to 350,000 in the US, only 60 or so people have what Jen likely has.
- In addition, BCS is found more prevalently in people of Chinese and Philippine descent.
- It’s also more common in men than in women.
- And historically has been found in infants and young children.
Now before you go off hunting for it via Google, let me tell you what Dr. Corboy told me:
- Early studies of BCS are very dire. It will indicate that this form of MS is aggressive, progressive and fatal.
- But considering how rare this disorder is and how early these studies were (and nearly all involved cases of young children and infants), it doesn’t “fit well anymore” with current day diagnosis of BCS.
- More recent studies of BCS show a more confusing picture, with some cases resolving completely (patients regaining nearly ALL if not all of their motor skills) and never having a recurrence again, with others resolving to more “run of the mill” MS type cycles with relapsing / remitting periods, while others turn out to be progressive forms of MS, where the symptoms get progressively worse with no remission between attacks.
I have included links to two studies that should provide you with positive outlooks for Jen’s future (at least they did for Jen and me last night).
One is the case of a 37 year old woman in England (2007 paper) whose symptoms, progression, lesion location, etc. etc. etc. are very very similar to Jen’s case. Her case eventually resolved completely with the woman regaining nearly all of her functioning.
Another is a a paper detailing 5 cases of BCS – all of which resolved eventually with no further recurrences.
So, there you go… – That’s why I updated the blog and contacted you all. – Jen needs your healing vibes now and through these next couple of harrowing days and weeks ahead.
Please feel free to reach out to her and give her your support and love (email and comments here on the blog are probably best so she isn’t inundated – but don’t hesitate to text or call if you feel the need).
Love you all,
Chris (and Jen)
Solu-medrol steroid treatment:
Plasma replacement therapy (and other MS treatments):
Balo’s Concentric Sclerosis:
Two BCS research studies:
December 27, 2010:
Well, this has been one hell of a trip, hasn’t it?
We started this journey with the possibility of some very dire causes for Jen’s symptoms. – And now, having talked to Colorado’s leading MS doctors (Dr. Corboy at Rocky Mountain MS) AND the nation’s leading expert in tumefactive MS (Dr. Weinshenker at Mayo), we have a (sort of) “final” diagnosis:
At this point, all signs point to: Tumefactive MS.
There are some differential diagnoses that may be considered, but all are increasingly less likely a cause.
What happened at Mayo?
Jen met with Dr. Tang, who did the standard MS testing to determine the severity of deficiencies on her left side. Dr. Weinshenker then joined us and Jen re-did the tests that showed the greatest weaknesses in her arm and leg.
At this point, the two treatments under consideration to relieve her symptoms are another dose of steroids or plasma replacement. (There are other meds to prevent future attacks, but the docs won’t consider those until Jen has had MS long enough to know what hers looks like.)
Dr. Weinshenker determined that the best course of action at this point is to continue to wait for her brain to heal itself. He sees positive signs of healing in a couple of tests, and in the fact that she no longer has the left side facial droop. If it happens that Jen’s symptoms get worse, we’ll have a couple of options to pursue in Colorado. So, our potential 5-7 day adventure in Mayo ended in about 4 hours.
So, what does this mean… – Tumefactive MS? – and why do all these docs think that this is what Jen has?
- Tumefactive MS displays as a larger than normal MS lesion and can appear on an MRI scan looking like a tumor. – (Yep – Jen’s lesion looks like this.)
- A lack of “mass effect” on a scan tends to indicate that this is not a tumor. – “Mass effect” means that whatever is in the brain pushes surrounding brain tissue away with its own mass. – (Jen’s lesion does NOT display this, hence their thought that this is not a tumor.)
- Ring enhancement (in other words, more highlighted outer ring “white” areas on a scan around the lesion and not throughout the lesion) tend to indicate that the lesion is not a cancer of some sort (lymphoma, etc.) – (Jen’s scans indicate a “C” shaped ring enhancing lesion.)
- Symptoms of Tumefactive MS patients tend to “wax and wane” for a longer period of time than “standard” MS patients. (Although we’d like to see her symptoms REALLY improve (and eventually go away), at this point Jen’s symptoms do in fact kind of “come and go” on a daily basis with less effect on some days and more on others.)
- Tumefactive MS tends to affect women of northern european descent in their 30’s to 40’s more so than women of other ethnicities and ages.
- Differential diagnosis would have to assume a very drastically compromised immune system for those diseases to take hold. – (Jen, frankly, is just too danged healthy for that to be a likely possibility.)
- As we have participated in the “wait and see” approach, Jen’s symptoms have not worsened drastically – nor have her successive scans indicated that her lesion is “declaring itself” to be anything other than an MS lesion.
Okay, so give me some positives about this diagnosis:
- According to Mayo’s own research, the average re-occurence of MS attacks for tumefactive MS patients is 4.8 years. This is a considerably longer period than for “run of the mill” MS patients. – So, as a point of reference, if Jen gets a future attack, she could be 46 years old before we ever see this again (and hopefully finally showing some signs of “middle age spread” (yeah, girlfriend!)) while Chris would be close to 52 (and finally showing some signs of gray hair (yeah , boyfriend!)).
- Jen has a single lesion in her brain. – Most MS cases involve several lesions in several different parts of the brain. – Although Jen’s lesion is larger, having fewer lesions is always better than having more.
- Jen’s symptoms are not that severe (in “MS terms”) compared to others with similar diagnosis. – In other words, as the doctors evaluate her loss of strength, coordination, dexterity, etc. of her left side, they find a deficiency level of only -1 or so. (As a point of reference – if she were assigned a deficiency level of -3, she would not be able to lift her hand and wrist at all to be tested for strength comparisons.)
- Being a “lighter case” of tumefactive MS (not so severe symptoms, only one lesion, smaller lesion (comparitively), etc. etc. etc.) – means that Jen has a very high likelihood of regaining most, if not all of her left side deficiencies she has experienced since this episode began in mid-October. (!!!)
- Being a “lighter case” of tumefactive MS, she also has a much higher likelihood of never experiencing another MS attack again ever (for life!). – Think about that!
- And the biggest positive by all considerations, (at least by me) – was that we are, at least, not facing the prospect of saying a final good-bye to our lovely Jen in a year or even three, if it was found that her symptoms were being caused by a malignant or even benign tumor of her brain. (!!!)
- Tumefactive MS tends to be “persistent” / “longer lasting” / etc. – compared to other forms of MS. – In other words, if a “run of the mill” MS episode lasts 6-8 weeks, a tumefactive MS episode could last 3-4 months, with a corresponding “recovery period” of probably 5-6 months.
- Tumefactive MS tends to “wax and wane” – so it could continue to affect Jen on a daily basis for months.
- EVERY MS patient is completely different from every other MS patient. – There is nothing we can extrapolate based upon others with similar lesions. – We can only tell what Jen’s patterns of attacks, re-occurence, etc. will be like once we see what Jen’s patterns of attacks, re-occurence, etc. will be like (over the course of time). – So, although it seems like it has been an eternity since we’ve all been dealing with her symptoms (since mid October) , we are really only in the initial phase of her disease and will learn more as she continues to travel down this path of an MS diagnosis.
- Jen is still experiencing some very debilitating symptoms. – She has a very hard time typing, writing, walking, cooking (dang it! – ), and pretty much anything else we bilateral humans do.
- Jen gets frustrated (daily) about this. – She is working on being more accepting, though. (right honey? )
- There is the possibility that the deficiencies she is experiencing now could be permanent going forward. – She may not recover any of her previous functionality.
- She may develop “run of the mill” MS eventually after this initial attack. “Run of the mill” MS meaning the recurring / remitting form of the disease (with multiple lesions appearing in future scans, etc.).
- She has the world’s most awesome and supportive family and friends
- We’re going to manage it as it goes, like all other people with MS do
- This is our last blog update!