Shawn's Journey

Shawn's new site at Caring Bridge

2011-12-10T16:44:00.001-06:00

Shawn just started a new site at Caring Bridge - follow him there at http://caringbridge.org/visit/shawngilley.

Painful Reminders

2011-12-05T15:03:00.003-06:00

The theme of the past five years has been I just need a diagnosis. After all, I can deal with anything if I just know what I'm dealing with. I'm certainly not going to say that it was better not knowing. In fact, I'm fairly comfortable describing that particular experience as a shit-filled nightmare lasting far longer than one ever thought could be possible.

That being said, this past month or so has been a reminder of what our reality is. The stress MRI found no treatable causes of the heart failure (blocked arteries, etc.) and thus, the assumption is that it's either a result of the beating the heart took over the past few years or it's directly related to the cancer. The good news is that the treatment is proving to hold the cardiac function normal and band-aid fix or not, I'll take it.

The MRI also showed that even with normal function, the heart is still enlarged, however, which is not great. Essentially, if you think of the heart as a balloon, a blockage could cause it to temporarily inflate and upon removing the blockage, the balloon returns back to its normal elasticity. However, if the balloon is over-inflated for too long, it becomes permanently stretched out and worn. So I can add living with heart failure to my list of things to deal with.

What's been most hard on myself and my family is the reminder that this is my life now. When we didn't know what was wrong, we could hope that they'll find this easily treatable thing that'll allow me to resume the life I had before this. And still after the carcinoid cancer diagnosis, every reminder that my life will never return to "normal" forces us to watch that hope we carried for so long shatter all over again. It happened when I picked up the paperwork from the oncologist with the diagnosis "metastatic carcinoid cancer". It happened with these recent tests where we somehow thought that maybe the heart failure was reversible. And it happened when after not being able to digest any food for a week, my oncologist said that the carcinoid syndrome will break through occasionally and there's not much we can do about that.

I've spent a lot of time mulling this over and I think what's so hard is the fact that I'm mourning the loss of the life I thought I'd have. I don't have the energy I used to. I will never be able to work full time due to the extreme fatigue from the medications and the disease itself. I have to exercise every single day because not only does it help maintain my appetite but the moment I stop, my muscles will shrivel to nothing.

But while I do get frustrated with certain realities, I have not let that stop me from creating a new life and planning a future with my new limitations. I do freelance copy writing for a local marketing firm, I teach religious school at the temple, I continue to supply my producer with new songs and I am in the midst of writing a book about this saga. Make no mistake about it, I can be knocked down over and over again but I will never stop standing back up.

The Saga Continues...

2011-11-18T13:13:00.002-06:00

It's been a while since I've posted anything up here, which actually is good news. For the first time in years, things have been pretty stable. Every three weeks, I go in for my lovely treatment (hint - lovely is definitely an insert for another word) and every six weeks or so, I visit with my oncologist to make sure everything is working correctly. So far, the treatment has definitely kept things from visibly growing on the CT scans and given that that's all they can do for metastatic carcinoids, I'll happily accept those results.

Now those of you who have been following this journey over the past few years know how difficult it has been going between doctors and keeping them all in communication with each other. That's why I chose to see a primary care physician in the same practice as my nephrologist who is the one who referred me to my oncologist. With everyone under the same roof, the communication is much more efficient and overall easier on me.

The last month or so though, I began to feel short of breath throughout the day and was having more and more trouble doing my daily exercise. I was also getting more swollen and having a lot of trouble sleeping without being propped up. When I saw my primary care doc, I told her about my shortness of breath and she listened to my heart and lungs, expressing concern over what she heard. Also, with carcinoids there's something called carcinoid heart disease where the excess hormones cause plaque like build up in the valves and consequently destroy them.

So she sent me to get an echocardiogram and my oncologist sent me to a pulmonologist and to have a pulmonary function test. Now at this point in the story I know it's beginning to sound like the diagnostic circles we have been running over the past few years where I have a symptom, doctors order tests and consults, everything comes back normal and they remain confused over the symptom.

Interestingly, this is the first time in as long as I can remember that that was not the outcome. My primary doc called me to say that while there was no evidence of the typical carcinoid heart disease, my heart in general wasn't pumping hard enough and as a result, is causing fluid buildup in my lungs and other extremities. She said she had reviewed the echo with the cardiologist in their practice and he wanted to see me.

So yesterday, I met with the cardiologist who explained that on my echo in 2009, my ejection fraction (the % of blood pumped out of the heart, normal being anything over 55% but ideally between 60-65%) was 65%. In 2010, my ejection fraction was the very border of normal at 55% and as of a few weeks ago, has now dipped to a troubling 41%. This reduced function is a result of a form of congestive heart failure known as systolic heart failure that he said could be explained by a number of things. It may be from the years of hypertension, though they would expect it to have been worse a few years ago when the blood pressure was out of control. It could also be from the excessive radiation from the high number of scans I've had, though that doesn't seem very likely either. He said he wants to run a stress MRI to see if there are any carcinoids lurking in or around the heart that are damaging it. However, he explained that quite often they don't find the exact cause of heart failure so we may not ever know.

The plan is to treat the heart failure with different blood pressure meds and a diuretic to keep the fluid from piling up. Even after the first day, I slept a million times better waking up only 4-5 times to go to the bathroom verses the 10-15 times I was waking up the past few weeks because I couldn't breathe. I decided that I need a break from hospitals for the week of thanksgiving and will be spending that week with Arie. Then after thanksgiving, I'll be seeing my oncologist and having the stress MRI that Wednesday 11/29.

As thanksgiving is the time to give thanks, I'll tell you exactly what I'm thankful for. I have a group of doctors that are working together to keep me as stable as possible. I have this new cardiologist who spent a lot of time with me and my parents to compassionately explain what's going on and pledge that he'll be spending many late nights doing research to see if there's anything else he can find out about carcinoids and heart failure. I have a wonderful and supportive family and I just celebrated my 4 year anniversary with my beautiful and supportive girlfriend. Yes the saga does continue but there are definitely a myriad of reasons why I can be thankful this turkey day.

A new chapter - a post by Shawn

2011-08-03T21:56:00.003-05:00

A few weeks ago, I met with an oncologist at University of Chicago’s Duchossois Center of Advanced Medicine, which is the home to one of the best oncology centers in the nation. After a brief discussion and a review of my records, this doctor seemed pretty confident in the diagnosis of carcinoid syndrome but to be sure, he wanted to try me on the common treatment and re-run some of the common hormone markers for carcinoids.

Then last Tuesday, July 28th, I sat in his office to experience a first for this horrifying diagnostic experience. First off, my chromagranin A, the blood hormone marker typically elevated in carcinoid patients, was 390 with normal being anything less than 225. In addition, my CT scan of the pelvis and chest showed several abnormalities including two spots on the pelvic bone suspicious for metastatic activity as well as some enlarged lymph nodes in the chest.

“Well Mr. Gilley,” my doctor started. “With these CT findings combined with the abnormal blood work and reaction to the treatment, let’s just call this what it is. It’s carcinoid cancer.”

So here’s where we are. I’m going in every three weeks for the chemotherapy treatment of carcinoid syndrome called sandostatin. To put it simply, it’s a mean son-of-a-bitch of a medicine causing awful stomach cramps, long periods of nausea, and more than anything else, feeling pretty run down.

I will go see the oncologist on a regular basis just like old friends and I’ll also have the pleasure of being on first name basis with all the lovely personnel and in the lab and in radiology.

So here’s the part that I’ve had trouble writing. You see, I can spout out the facts with ease but the tricky part for me is verbalizing my reaction to all of this. Because while I’ve certainly known there’s something wrong for the better part of the last four years, I haven’t had anyone willing to definitively classify it.

I’ve watched the unique ways everyone around me has responded. Some simply want to say it’s great news. While I am absolutely relieved that the searching game we’ve been playing is over, I think I may have a different understanding of great news. You see, getting a dream job, that’s great news. Getting married; that’s splendid. Just bought a new car, well kudos to you. Diagnosed with a remarkably uncommon and infrequently studied cancer, not exactly news worth popping the champagne for.

And yet, there’s the other people who stand there, shuffle their feet awkwardly, fix their gaze on the floor tiles and mutter something about being optimistic that treatment will help and that they’re sorry I’m going through this. Certainly an understandable reaction and in no way am I trying to pass judgment on those who have reacted this way.

Truth be told, I don’t begrudge any of these reactions because really, what the hell do you say to this? We’ve traded the bad news of “I don’t know what’s wrong” for some different bad news.

Here’s my reaction and it’s not simple. Am I relieved? I’m relieved that I know what I’m fighting against. I know what I can do to help myself stay strong and as healthy as possible and I know what the plan is to continuously treat it. And yet, I’m not really happy either.

I’m mad as hell that while my friends are joyously posting pictures and statuses about their first jobs on facebook, I’m being driven to treatments and spending uncanny amounts of time sipping ginger ale and praying to not have to run back to the bathroom. Even more, I’m sitting in my bed with one hand on my stomach thinking about the fact that while we may have a current plan for treatment, there is no plan for ending treatment.

As in, this is it folks. My dreams of being a teacher and working passionately and intensely in a high school classroom, a la Robin Williams in “Dead Poet’s Society”, has shattered like a glass frame holding that aspiration on my mantle.

So my reaction is that after four years of my life revolving around the search for this diagnostic unicorn, I’m trying to figure out what my life is with this less than positive reality permanently affixed to it. I’m putting away old dreams and trying to forge new ones. I’m accepting the pieces of my life that are out of my hands and taking this one-day at a time.

I’m fixating on the truth that I’m extremely lucky to have a girl that has not only stuck by me these past years, but has made even the most miserable times tolerable with her unwavering love and support. More over, I’m appreciating the fact that this illness has made me smart enough to appreciate her and make sure I never take her for granted for even a fraction of a second.

I’m lucky to have parents that sit hours on end in every waiting room of every doctor’s office and testing facility and have been there to support me every step of the way. They’ve been through their own version of hell these past few years that I can’t fathom and I admire them for continuing to wake up each day and simply get out of bed.

Quite honestly, both my family and myself simply need to time to cope and adjust. So be patient and understand that while it’s good news that we know what we’re doing, the hope we’ve been clinging to these past years that maybe this is a simple and curable thing has been taken away. Now we’re left standing here piecing together the silver linings with the unsavory realities.

Where We Are - a post by Shawn

2011-04-01T14:54:00.004-05:00

Over the past few years, we've been on a diagnostic roller coaster that has lasted far too long. All throughout this time, we've had the mindset that if they could just diagnose this, everything would be better. A few weeks ago, I saw an oncologist in Bloomington and just left his office from a follow up an hour ago. As far as a diagnosis, he is confident in calling this carcincoid syndrome. However, here's the tricky part. Carcinoid syndrome is a paraneoplastic syndrome, which is, "a rare disorders that is triggered by an altered immune system response to cancer." But, treatment for carcinoid syndrome is purely symptomatic. Since carcinoids are wildly small in nature, they are very difficult to find so while my hormone levels associated with carcinoids are high, they don't know where the primary tumor is. I'm going to see an oncologist in Indianapolis for further insight but as of now, the we are no where near the conclusion of this drama.

For the time being, I'm going to do what I've been doing. I'm going to keep working on my degree and maintaining my optimism that some day, I can have a life that doesn't involve spending as much time with doctors as I do with friends.

Happy Birthday Shawn

2011-02-08T21:10:00.000-06:00

Yesterday was Shawn's 22nd birthday. I spent part of the day looking at old videos:

update - more waiting

2011-01-13T11:37:00.000-06:00

In the past few months, Shawn's seen a few new doctors and has had lots more tests. The current thinking from the gastroenterologist is that his nausea and weight loss are caused by his hypercalcemia. Neurologist likewise believes that neuromuscular problems are due to hypercalcemia.

What remains a mystery is what is causing the hypercalcemia. A new round of blood tests, urine tests, CT scan, xrays failed to help pinpoint the cause.

About a month after the bone scan, Shawn started feeling a new spot on one of the bones of his right hand. Sure enough, it is located right where the scan lit up. What does all this mean? The short answer: more doctors!

We're waiting to hear back now from two new doctors to schedule appointments. One in Bloomington and another at U of C. So for now, more waiting... waiting... waiting...

Giving thanks

2010-11-25T23:04:00.000-06:00

Today I am so very thankful for all the wonderful people in our lives. Happy Thanksgiving to you all.

new path in this complicated journey

2010-11-04T14:20:00.000-05:00

I think the title of this blog is pretty accurate - this has indeed been a journey. A complicated, twisted one - the path curves around this way and that, sometimes crossing itself and going backwards, so that you are never quite sure what is around the next curve.

A few months ago, Shawn noticed some places that feel like bone growths - hard pebbly like structures that you can see and feel - at various spots on his body. One on the back of his skull, one on his ankle, a few on his chest bone. Xrays showed nothing unusual. This week he had a bone scan, which will light up areas of abnormal bone metabolism. The scan lit up in two places - the chest, which makes sense since he feels something there, and his right hand. We aren't sure what to make of this, he's never had any pain in the hand, never seen or felt anything there. Also not sure what this means for the other two spots that didn't show up on the bone scan.

Tomorrow he's having an xray of the right hand, and meanwhile his doctor wants to talk to a few other doctors before suggesting what to do next.

Besides the xray tomorrow, Shawn also has an appointment with his neurologist next Thursday. Dr. C. doesn't like the exaggerated reflexes he sees in Shawn (hyperreflexia). This has been around for awhile as well, initially the neurologist thought it was Myasthenia. The neuromuscular specialist we saw didn't think that was likely given the EMG results.

So here we are still twisting this way and that on this complex journey.

Open enrollment also = $$Expensive

2010-08-24T19:06:00.000-05:00

Let me make this very clear: I am quite grateful to have insurance at all, especially for Shawn. His pharmacy bill alone would be over $600/month right now without insurance.

On the other hand, my new "exciting" options during open enrollment also managed to pack an "exciting" new price tag. I spent quite a long time trying to figure out what options would make most sense for us, and ended up with a plan very close to what we have right now - all for $400 more a month.

:-(

It feels to me like the insurance company is taking advantage of new healthcare reform to hike up prices.

Open Enrollment = Confusion

2010-08-09T19:57:00.000-05:00

Open enrollment. My HR website says "All new exciting benefits for 2010/2011" What this really means is "you are about to enter into a strange murky world of non-intelligible double speak which you have to untangle in order to make the right choice."

The good news is, thanks to the health care bill, I no longer have to worry about Shawn's full-time status at school. (The kicker is, for the moment he's actually scheduled to be a full-time student for the first time since Freshman year.) But regardless of his current enrollment, we won't have to start worrying if he ends up dropping a class, so YES, I am still quite thankful for the bill.

The new choices seem straightforward, there is a nice little table with the 8 different policies and key features to compare. It turns out this table is at best useless. At worst, perhaps a little misleading.

There is an HDHP (High Deductible Health Plan) choice, which allows you to also establish an HSA (Health Savings Account). Last year my accountant suggested I look into this type of account, as I spent a considerable amount on medical expenses, but not quite enough to itemize. The nice thing about an HSA account is you can roll over any money left in it from year to year, and it earns interest tax free. Money from the account can be used only for medical expenses. And you can only open one with a corresponding HDHP.

So on to the HDHP. The deductibles on this are $2500 individual/$5000 family. You might think that means that as soon as a single person (individual) on the plan pays more than $2500 that they have met the deductible. I would think that as well. And it seems we would be wrong.

After spending quite a long time talking with a really nice woman from Aetna - one I have every reason to believe knows what she is talking about - I have learned that the HDHP policy has a different definition of family vs. individual deductible than the PPO policies.

The HDHP policy requires the family deductible to be met if the policy is a "family" policy - that is if it covers more than a single person. The PPO deductible is a per/person amount even for a policy that covers more than a single person. So under the PPO, Shawn's deductible will be met when he has more than the individual amount of expenses, while under the HDHP it won't be met until the family limit has been met. This sounds awfully strange to me and possibly I've still got it wrong, but we spent quite a long time talking about this and the representative was pretty specific about it.

Another thing: How you satisify the deductible is different for different plans. For the PPO, pharmacy costs do not count towards the deductible. But for the HDHP, cost of medicine does count towards the deductible.

The nice little table that my HR website has comparing the plans is pretty much meaningless, since the same language means different things for different policies! How you meet a deductible is different, which deductible you have to meet is different, what happens once you meet the deductible is different.

Under the HDHP, you pay full costs for everything until you meet the deductible. Shawn's monthly pharmacy bill alone will be enough to do this within approximately 8 month, even with no other medical expenses. So I know we'll meet the deductible, but then I also know we'll blow through all the money in the HSA.

I started today's call thinking I wanted the HDHP. Now I'm less sure. While the HDHP policy is quit a bit cheaper, the HDHP + HSA together are about the same price as one of the PPOs. And I know I'll use all the money in the HSA, so there will be no chance to roll it over (one of the things that is attractive about an HSA). Which makes it not that different from the higher premium of the PPO, which is also paid in pre-tax dollars.

After spending a few hours on this today, I now think I need to delve into the other differences between the HDHP and PPO coverage of individual expenses. I think I'll be back on the phone again tomorrow with Aetna's customer service.

And in the meantime if anyone out there has any insights or experience with an HDHP plan (especially Aetna's HDHP) please leave a comment below!

catching up

2010-07-06T19:43:00.000-05:00

It's been a whirlwind of a month... since breaking my foot Shawn and I have been to: Atlanta, Philadelphia, New York City, Atlantic City, Beach Haven (Long Beach Island), Paramus, Beach Haven, Philadelphia, Chicago! Most of the trip was vacation, with a side trip to a doctor in NY, and the unveiling of my grandmother's gravestone thrown in.

Travel was a little challenging but we made it. I got a knee scooter and was able to walk/scoot more than five miles when we were in NYC. It also allowed me to go back and forth to our favorite seafood place while at the beach. It's not quite as easy as it looks but much easier than crutches.

Shawn's been trying to build up leg muscles and was able to walk quite a bit while at the beach - he has a new crutch that is much more comfortable to use than his cane.

As for the doctor visit, I never really know what to say after seeing a new doctor. He took lots of blood, said this could be like some of the cases he's seen but wasn't really sure, there were a number of things that didn't really fit - which seems to be a recurring theme.

He did switch medicine around quite a bit. Said that some of the medicines were obviously not doing much during an episode and that Shawn's body was fighting them during the rest of the time. Also beta blocker has stopped working once again, as his heart rate was 130 while at the office. So he switched two medicines, dropped one, and started weaning him off another. It all sounded great until the day Shawn started switching medicines. He spent the next day completely wiped out, chest pain and very high blood pressure that lasted hours rather than the normal 20-30 minutes. This caused the doctor to increase dosage of one of the new medicines and also add in another. First day of this new one was not fun, about an hour after taking it Shawn was nauseous, not long after that he was throwing up. Next night he took an anti-nausea medicine before taking it, which completely wiped him out. Since then he's been taking it right before going to bed which seems to be doing a little better.

The doctor says it will be two weeks before we really know if the new meds are working. Thus far, doesn't seem to be doing much that's different than before, but we're only a week into the two week period, so I guess we'll see.

Happiness

2010-06-08T22:07:00.003-05:00

When we lived in England, one of my favorite memories was after having broken my leg, sitting on my couch and listening to Shawn play guitar and sing.

Now here I am again, broken foot this time. But even so, I'm sitting here listening to Shawn play piano and sing. And it occurs to me that as much of a physical and logistic pain the next few weeks will be, right this moment I am happy.

Sent from my iPhone :-)

just a little added excitement

2010-06-08T20:52:00.001-05:00

Tomorrow Shawn and I leave for a three part trip. First, Atlanta - me to stay with my friend, Shawn to attend a conference, followed by a trip to NY to see a doctor, then to the Jersey short to spend time with my family.

So I figured I'd make the trip a little more exciting by first breaking my foot. I have a non-weight bearing cast and crutches. The non-weight bearing part means I get to build up my arm muscles, while simultaneously losing muscle in my left leg.

Never a boring moment.

Insurance

2010-05-04T09:54:00.000-05:00

Shawn got a letter yesterday from our insurance company. As we had appealed their decision to not insure him, I expected the letter was in response to that, saying they would stick with their earlier ruling. But lo and behold - it again said just the opposite! Remember, last time I opened a letter from them, I was assuming it was restating what I had been told on the phone, that they would insure him, but instead it said they were denying coverage. So this time, the letter said they had reversed their earlier decision and WOULD BE INSURING HIM!

The authorization is effective on March 3, 2010, the date he went on COBRA. So now, I have to find out how to get back the last two months of COBRA payments, plus the May payment that was sent in just a few days ago.

CT scan Wednesday

2010-04-19T10:28:00.000-05:00

Insurance precertification in hand, Shawn has a CT scan this Wednesday, along with some more blood tests.

waiting for insurance approval

2010-04-18T19:28:00.000-05:00

There is so much I don't understand about the objections I hear about the current health reform bill. But the thing I completely don't understand is when people say that they don't want the government making health care decisions for them. I suppose that when people say that, they think that the alternative is that they themselves are the ones who should make these decisions. And I guess that they must think that is what happens today.

I'm here to tell you otherwise. When it comes to an expensive treatment or test, the one in charge of making decisions today is not the patient. It's the insurance company.

A few weeks ago, Shawn was dehydrated, and many of his labs were elevated, including his calcium level. After modifying his medicine (dropping the most recently added diuretic) the dehydration and most of the lab results improved but his calcium level was higher rather than lower. The sustained hypercalcemia has led Shawn's doctors to look at some other conditions not previously considered. But when his doctor tried to schedule a CT scan, the insurance company requested more information before they would approve. So we are now waiting for the insurance company before the next round of tests can be scheduled.

I see nothing in this current bill that will change this. So I don't understand the argument of "I don't want the government making decisions for me." In fact, the only decision the government will be making in this new bill is that everyone will have insurance coverage in the first place. Then the insurance company gets to decide just like they do today.

And if the doctor and/or patient don't like the insurance company's decision, what can they do? Well, they can sue the insurance company which puts it in the hands of, uhm, the government. That's not new, and also won't be changed by the health care reform.

But what is new is that the insurance company can't decide to just drop the individual when they determine that they are spending too much money on them. And they can't decline to cover someone. In our case, that is worth quite a lot.

How about some GREAT NEWS for a change?

2010-04-09T11:23:00.005-05:00

SHAWN'S FIRST PUBLISHED SONG JUST HIT iTUNES!!! Ridin' On The Rim - track # 6 on Heartsfield's new album "Here I Am".

Not only did he write this song, he also sings on the track - he is the first voice you hear on at the beginning of each verse.

He wrote this song about 4 years ago, when he was in high school, in the summer between his junior and senior year. The night before we were leaving to go to New Jersey, there was a truck driving by, and someone said it sounded like it was riding on the rim. He liked the phrase, and started writing. He first performed it the next day for my parents and grandmother. When he got to the 2nd verse, he stopped and said "you'll like this, Poppa," then proceded singing the phrase "my girlfriend finds a way to spend all my money."

He recorded this song a few years later, before going back to his sophomore year of college. The person who recorded it thought that a producer friend of his would like it. It turns out this friend was in the process of putting together a new album for Heartsfield. And that's how Ridin' On The Rim made it to Heartsfield's album "Here I Am." A big thanks to Craig for starting the wheels of this particular truck in motion!

So go take a listen, buy the song, rate it on iTunes, and tell all your friends!!!

Or, if you prefer, here's the link to the CDBaby distribution of the album.

Thank You, President Obama

2010-03-23T19:08:00.002-05:00

As someone who has experienced first hand the issues that surround insurance of dependents who are not full time students, let me tell you this is HUGE. We had a brief glimpse of this last year, when IL passed a law requiring insurance policies to insure all dependents under 26, but there were a few loopholes - one for self-insured companies (which IBM was) and a second one for policies written outside of the state of IL (which my new company's insurance policy is). But now the law is a national one and I can once again insure Shawn without having to worry about how many hours of classes he feels he can handle. (Which has not been full time since his first semester of college.)

I was working earlier and didn't watch the signing, but I just read Obama's speech. I have to admit I cried. I also became a co-signer of the bill - which you can do too by clicking here.

the state of things...post by Shawn

2010-03-19T11:19:00.003-05:00

Seeing as I usually post the medical facts and not much more, I decided I'd explain how things are going. To get these out of the way, I'll go into the less-than-great aspects of this journey. Recently, my nausea has been pretty awful so on top of taking anti-nausea medications every day, I still have a difficult time getting myself to eat. Therefore, my weight has been tumbling off and at this point, I'm below what I weighed in High School (however, that's better than before where I gained a lot of weight). Also, because my muscles have shrunk considerably, I exacerbated an old knee injury and now am walking on a knee full of shredded cartilage and other stuff. Furthermore, my energy levels are extremely low and make it difficult to do everything I need to in a day. Finally, my blood pressure surges over the past few years have been damaging my heart to the point that my heart is enlarged and weaker than before.

However, those who know me know I'm not a negative person and I have found ways the past few years to find the good in all of this. While I know I can't control the wildly fluctuating blood pressure, I can help my cardiac function by keeping a VERY STRICT low sodium and low fat diet. That means I've been staying away from red meat, butter, cheese, milk, bread, etc. I have found that this diet has been helping me to feel a little more energetic. I have tried to attend classes as much as possible this semester and keep up with my school work along with teaching at Edgewood High School (go mustangs!) and teaching at the religious school. I have been able to do these things with some regularity except for the days that I feel worse than usual. And, I have a great group of friends, supportive family, and Arie who have all stuck by me through the countless tests, procedures, surgeries, treatments, etc.

People keep asking me how I am and I'm not sure how to answer that question. I feel like when I tell them I'm doing well, they take that to mean that I feel well, which is not true. Truthfully, I haven't gone a day without pain, nausea, fatigue, etc., in years and have trouble remembering what those feel like. However, I'm doing well IN SPITE of all of this. I'm finding things to do that make me happy, I'm teaching, and I'm spending time with family and friends.

I taught a lesson last week on optimism and one of my students had a great response to what true optimism is. She said that optimism isn't impressive or completely real when everything is going well in your life. Impressive optimism is being able to see the good in things in spite of all of the negative in your life. In my opinion, optimism is vital to making it through any illness and I refuse to let mine go so I guess I'm doing pretty well.

New Meds

2010-03-19T11:05:00.001-05:00

Shuffling around of medication yet again... here's Shawn trying to figure out which is which. For those keeping score, he has 6 different drugs for blood pressure, 1 for headaches, 1 for nausea, and at the moment amoxicillian for a sinus infection.

On Wednesday we saw his doctor at the U of C hypertension clinic, he dropped two of the blood pressure medications and added in two new ones. This makes the new set of blood pressure meds the following:

Morning	Evening
Toprol XL 100mg	Diltiazem CD 240mg
Nifedipine XL 30mg	Dibenzyline 20mg
Tecturna 300-25mg	Clonidine .2mg
Dibenzyline 20mg
Clonidine .2 mg

Add to that daily medication for nausea, another one for headaches, and for a few more days, antibiotics for a sinus infection. Not sure why he doesn't rattle around when he walks.

wait for COBRA letter is finally over

2010-03-05T15:48:00.000-06:00

Last week, I called to cancel Shawn's COBRA policy from my former employer, so that he could go on the new COBRA policy starting on March 1. But it turns out I couldn't cancel -- it was his policy so he needed to call. The person I talked to said Shawn would need to call and enter his social security number, not mine, in the menu of prompts you hear when you call. So I called him and told him what to do. Ten minutes later he called back and said that after going through all the phone menus to get to a person, they said they would need MY social security number as well, which of course he didn't have... so he had to call me, get the number, and call them back, going through the phone menus all over again. (These are nothing compared to Comcast, which I've blogged about before. Still, before reaching a person you have to enter 5 or 6 different pieces of information and get transferred at least once.) So armed with my social security number, he dialed, entered all the information, and successfully cancelled his policy before having to pay for another month.

Step two is to sign up for the new COBRA, which we can't do until I receive the letter from HR. But they can't send out the letter saying he is eligible until the day he is no longer covered - which was March 1, this past Monday. I figured it would take a few days to reach me so I was expecting to get the letter Wednesday or Thursday. Each day, as soon as the mail came, I eagerly searched for the letter. Nothing on Wednesday. Slight apprehension now but I figured surely it would be there on Thursday. But no, Thursday mail arrives and still no letter. Now I start to worry so I called HR. A very nice woman who has been helping me assured me that the letter "should have been sent on Monday" and that she would double check. She later contacted me and verified it was sent.

Finally, today's mail arrives and there is the COBRA packet. I filled it out and sent a scanned copy back to HR within an hour of receiving it. And I am about to head to the post office to send the paper copy along with the first check. I hope it gets processed in time for his next doctor appointments the week after next, as well as in time for him to refill this month's prescriptions.

Trust nothing until you have it in writing...insurance part 2

2010-02-25T18:06:00.000-06:00

After calling the insurance company every few days, finally I got an "answer" from someone. She said "I see the form in your file and it has not been rejected." I asked what that meant, and she said that it meant Shawn was covered. "Not rejected" didn't sound quite good enough to me, so I asked if I would be getting a letter to that effect. She said to expect a letter in the next 5-7 days. Sure enough, 5 days later a letter appeared. Unfortunately, it did not say what I was told; in fact it said exactly the opposite - that the Shawn does not qualify for continuation of coverage. It is their determination that he is capable of self support and therefore not eligible for coverage unless he is a full time student.

This can be appealed, and we're working on that. Meanwhile, it turns out that prior to this decision, he was being covered by them in January and February, so he is now eligible for COBRA from my new insurance company. And because the event is a loss of dependent eligibility, he is entitled to 36 months of COBRA, rather than the 18 months from IBM. (The event for IBM was not loss of status, it was loss of coverage, which has different time limits).

So for now, we're switching COBRA from one policy to another, and if nothing else we'll at least have that for the next three years, until he turns 24. Hopefully between now and then something will change for the better - his health or our country's insurance situation - is it too much to hope for BOTH of these?

National Donor Day - February 14

2010-02-02T15:37:00.000-06:00

I have a friend who recently had a liver transplant. Through him and his family I've seen just how horrific it is to be waiting for an organ. I hope no one reading this ever has to go through such an experience. But whether or not it is someone we know, it's certain that this same horrible wait is being experienced by countless other families.

So I'd like to use this space to tell everyone about National Donor Day:
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As National Donor Day approaches, visit OrganDonor.gov to learn about donating organs, tissue, marrow, blood, and other life-saving matter.
If you would like to become a donor, fill out an organ and tissue donation card, register with your State Donor Registry, and convey your wishes to your family. To donate blood, visit the Red Cross and find a donation site near you.

insurance worries once again

2010-02-01T17:58:00.001-06:00

Once again, I'm not sure exactly what will happen with insurance for Shawn. The one big hesitation about taking this new job was whether I'd be able to insure Shawn who is over 19 and not a full time student.

In Illinois, this is not a problem - but the Illinois law (which lets a parent insure any dependent up to the age of 26) doesn't apply to policies that are not written in Illinois. And my company is based in California, not Illinois.

In December, I was told that we'd most likely get insurance by considering him a disabled dependent. We promptly filled out their form and were told that were this submitted by a member it would be accepted, but will have to be resubmitted once you sign up. That, plus the knowledge that at the very least we have COBRA for 18 months, plus the outside hope that SOMETHING would change with regard to health care in the US in those 18 months, made me decide to go for it.

>But now here we are, last year's insurance carrier has been replaced by a new group of carriers, I've signed up for one and submitted new paperwork, and I'm waiting to hear their decision as to whether they will cover him. I call every few days - first to make sure the paperwork was received (which they couldn't verify until two days after it was faxed, as it has to first "get into the system"). Then to verify that it's been filled out correctly and there is nothing else they need from either me or Shawn's doctor. Then to find out the status which for the last few weeks has been "they are processing it." On Thursday I was told that they should have an answer in the next week or so and that if they deny the dependent they will refund the premiums. But of course it's not the premiums I'm worried about, it's the INSURANCE.

I hear lots of pros and cons about the health care bill: "it's not perfect", "it doesn't contain X", "it contains Y which I disagree with".... but I suspect none of those that are against it are sitting around worrying if they or their family will be insured. And now it seems to be more about whether the Republicans or Democrats will "win" and seems to have nothing to do with the people who are denied insurance because they are in the position of needing it.

From where I sit right now, I care less about finding the perfect solution and more about finding ANY solution that will allow me to have the peace of mind to concentrate on finding a diagnosis for my son rather than worry about how to keep him insured.

Not Myasthenia?

2010-02-01T11:10:00.000-06:00

Based on the EMG, Dr. P, who is a neuromuscular specialist, doesn't believe that the muscular weakness is originating from either Myasthenia or any other neuromuscular disease. Which is both good and bad. The bad, of course, is it leaves us once again with trying to figure out what IS causing the weakness, breathing problems, unstable blood pressure...

Dr. P's recommendation was to bring in another doctor - Dr. N, an internist who has a reputation for managing difficult cases. So he's next on our journey, we see him this Thursday.

Preparing for Thanksgiving

2009-11-25T13:51:00.001-06:00

Shawn, Zeke and Dave are all busy preparing for Thanksgiving.

Echocardiogram

2009-11-12T08:52:00.002-06:00

I just spoke with my doctor at the IU health center about the results of the echocardiogram. The echo showed enlarged heart and decreased cardiac function further suggesting a cardiomyopathy. The big question at this point is where do we go from here? My endocrinologist at University of Chicago thinks that seeing a cardiologist is unhelpful because while there are cadiological problems, there is no direct treatment for them short of treating the main disease. He thinks that the problem is autoimmune so we have to follow up on that.

My doctor at the health center is calling my neuromuscular doctor and a few other doctors to try and see what we can do from here.

New Developments - post from shawn

2009-11-09T18:07:00.015-06:00

The good news is that the mestonin increase has helped dramatically in my ability to move my legs, breathe and chew.. The bad news was I had the flu a few weeks ago. The good news is that I've (mostly) recovered from the flu now.

Unfortunately, for some reason on Friday I started having problems breathing while I was lying down and my weakness progressed dramatically. I went to the IU health center today. After running an ECG (EKG), there was a new red flag, something called atrioventricular block which is a problem with the conduction between the atria and ventricles of the heart. The assumption is that I may have something called cardiomyopathy which is secondary to whatever the underlying disease is.

At this point, I have an echocardiogram on Wednesday morning and I am supposed to stay away from campus for a few more weeks. Other than that, we're going to go see the Endocrinologist at U of C and see where we go from here.

a rant about voice menus

2009-10-22T23:36:00.000-05:00

Life has gotten much too busy for me lately. First there's my normal job which hasn't really changed, too many meetings and not enough time. Then there's the extra layer of more meetings and trying to migrate computers, learn new mail software, new conferencing procedures, new ways of doing many of the little things we never thought much about - all that goes with the recent acquisition of my company by IBM. Some things are better, some worse, but that extra layer of activity that has made life quite hectic.

And then there's the purchase of a new condo in Indiana, the closing a few weeks ago followed by the move, followed by a few projects like stripping wallpaper. We absolutely LOVE the place, Shawn is so happy there and that's a great thing. But along with a new place to live are new bills to sort out. One such bill is the cable/internet, fairly important in the life of a college student. Today I went online to set up the account so I could pay this bill. And here is where the trouble began.

Let's step back a little over three weeks ago - to when we were trying to decide between AT&T and Comcast. I have AT&T Uverse here at home for TV/phone/ internet. The combined package turned out to be cheaper than my earlier landline phone bill. But for the condo, we didn't need a phone number; Shawn uses his cell phone everywhere and we didn't see the need of a landline. When we compared prices for AT&T TV/internet with Comcast TV/internet, Comcast came in about $30 less a month. I called to set up the service and here's what happened:

I dial the number and it is immediately answered. First, I hear voice ad for Comcast. This ends with "Please enter the phone number for the address where you have or desire service."

SO - here is the first problem. I DON'T HAVE a phone number for this address. Actually, three weeks ago I didn't even yet have the address. And does this company not realize that they might be the ones providing the phone as well, in which case other callers won't yet have a phone number either?? Well, ok, you would think dialing a 0 or maybe just the pound key by itself would signal an operator or in some way indicate you can't enter a phone number. But you'd be wrong. Instead you hear "Wrong number of digits, please enter the phone number for your address." Second time, I tried entering my cell number. Now I hear "This number is not valid, please enter the phone number for your address." Now I have no other numbers to try - I don't want to enter my home phone number because I don't want Comcast there. I go back to hitting the # key. After a few more tries, it finally realizes that maybe I should be routed somewhere, so I hear "Enter 1 for residential, 2 for business".

Now we're getting somewhere. I know the answer to this one - I hit the 1 key. More options, I don't remember them all but finally somehow I get a real live person. And I give them the address of the condo.

But they can't find that address and after a few more questions it turns out that part of Indiana is served by one center, the rest by a different one. Although one of the many prompts I had to answer was the zip code of where I wanted service, I've still managed to be routed to the wrong center. I'm transferred to another number... yes, you guessed it, now I'm back to hearing "Enter the phone number...". At this point I'm pretty close to hanging up, but I think of Shawn and his need for the internet and I get through it. After hitting # four or five more times, then answering lots more prompts I again talk to a real person and get an appointment set up to get service!!! The battle is over and I've won.

Well... maybe. Fast forward to today. I go online, armed with my account number and the assurance from the installer that my cell phone is now linked to my account. I try to log into the site to get the electronic version of my bill. I enter the numbers and it says an account is already set up. This seems odd, I don't remember doing this, but I try using my standard name/password. It doesn't work. No problem, there is a link to get help. I try that and get a page asking for ... yes, you've guessed it, my phone number. But the guy who installed everything said my cell phone was linked to my account, so I try it. No dice. "This is not a valid number, please enter the phone number for your account."

I'm going to have to call Comcast. I'd *almost* forgotten my earlier experience with them. That is until I dial the number, hear the ad followed by the the instruction to enter my phone number. And again, it is NOT A VALID PHONE NUMBER for them. I am seriously ready to throw the phone at someone. Instead I hang up. But I quickly realize I really do have to talk to someone and I call again, suffer through the prompts saying this is not a valid number, you have not entered enough numbers, you have not entered enough numbers, you have not entered enough numbers, you have not entered enough numbers... I now want to scream. I finally get a person who tells me my login name, one I would never have picked, and then tells me the password, which I enter into the page one letter at a time as she tells me. I don't know where this login came from, but it's ok, finally I'm on the site and we hang up.

The first thing I need to do is change my password since I have NO idea what the one I typed in one letter at a time was - it was a random set of letters. I click on the link. And of course, I need to provide my current password in order to change it.

Yes, I have to call back. At this point I really am ready to cancel the service rather than have to entertain the thought of ever again having to call that number.

This story ends well - I now have everything taken care of; I've changed my password to one I know, have set up to have bills emailed to me, and will most likely never go to that site again. And I will say this - most of the actual human beings I talked to were nice, sympathetic, and helpful. But I hope that I never have to call that number again in my lifetime.

There is a postscript to this story. After finally getting the info I needed from the site, I logged into my bank to set up direct payments. After entering a new payee I have to verify who I am. I find this sensible, after all this is my money they are protecting. So I enter my debit card number and the last four digits of my social security number. I get an error. I must have typed the card number wrong, I try again, more carefully. Another error. A third time and I'm now locked out of online access and I have to call the bank. Thankfully no voice hell from my bank - I get right to a person and explain the problem. He resets access, I go back in, and try again. Still getting an error. He asks what number I'm using and I tell him. He says that's not what we have for your social security number. Turns out that somehow, they've mixed up my social security number with Shawn's. Tomorrow I need to go to a branch and get that sorted out.

All this makes me wonder - does Shawn *really* need to have the internet and tv?

another doctor, more tests on the way

2009-10-16T21:37:00.000-05:00

Shawn saw a neuromuscular specialist today in Indianapolis. He said that this could be Myasthenia but it's not certain - could still be other things as well. Nothing about this weakness contradicts Myasthenia but it's generalized enough that it could be other things as well. There are a few possible tests he wants to consider, and he also wants Shawn to increase the dosage of mestonin for the next few days and see what it does.

So Shawn will touch base with him early next week to find out what's next and report on what effect increasing the medication has.

Myasthenia Gravis

2009-09-18T10:35:00.004-05:00

A few weeks ago, I saw a neurologist in Bloomington who ran several tests for different neuromuscular diseases. One that he thought may explain a lot of the problems I've had is a disease called myasthenia gravis which is an autoimmune disease that causes neuromuscular problems such as pulmonary weakness and significant muscle fatigue. Also, a large percentage of people with this disease have thymic hyperplasia. While the blood test for one of the antibodies was negative, there is a form of it called seronegative myasthenia gravis (SNMG). He started me on the medication called pyridostigmine to see if I had a positive reaction on Tuesday.

So far, my breathing has become easier and I can take deep breaths without feeling like I have weights on my chest. My walking has gotten a little better but not much. The neurologist's office said they didn't expect me to get completely better, they were just hoping for minor improvement.

They'll keep me on the current dose for a week and then increase the dosage and maybe add a few different medicines. Hopefully, this will be the beginning of the end to some of this diagnostic nightmare. I'll post more as I know.

insurance

2009-09-14T18:10:00.001-05:00

I just found out that IBM WILL INSURE SHAWN!!!! I was pretty sure they would be I can't tell you how big of a relief it is to know for sure. They said that since his reason for not being a full-time student was due to illness that he'd qualify for coverage under their policy.

Thank you IBM. (and an even bigger thanks to Alison who was a huge help in navigating this particular issue.)

sleep study, insurance woes

2009-09-10T21:13:00.003-05:00

Tonight Shawn's spending the night in the Bloomington Hospital so that they can watch him sleep. The pulmonologist suggested this to see if he might benefit from oxygen at night. So he's all hooked up to pretty wires for the night. Here's a self-photo taken from his iPhone.

Looks like it's going to be a fun night.

He's been told it may take a few weeks to get results. Where have we heard that before?

And while Obama tries to get some sort of Health Care bill passed, we're having our own horror story of health insurance worries...

I can't tell you how wonderful it was to not have to worry about full-time student status under my company's new health care policy, which started on June 1. This change was instituted in anticipation of the new Illinois state law which would have required it by the end of the year. And it was such a HUGE relief from the previous year when we spent so much time worrying about how he'd be able to continue to be full time after missing so much class because of hospital visits. This state law was just incredible for us. No more worrying about how many classes he had to enroll in for the rest of his college career - he could take some classes online (which count toward graduation but not toward student status).

But now my company is being bought by IBM, which is exempt from the IL state law because they are self-insured. IBM's policy requires full-time status after the age of 19. And Shawn is a) 20 and b) not a full time student this semester, because he wasn't going to need to be anymore.

I'm choosing not to panic just yet. There is a clause in the IBM policy dealing with exceptions for illness, and their HR is 'looking into' it. Surely this will all work out.

Meanwhile it's all happening SOON. The current timeline will have us on IBM's benefits by November 1. So I wait with bated breath (but not panicking, I'm not going to panic, it's all going to work out. No panicking here. Maybe a little stress, but no panic. Not sleeping so well, come to think of it, but no, not going to panic. Not just yet, anyway.)

waiting for results...

2009-08-27T08:11:00.000-05:00

And while my little friend below is waiting for his train, we are once again waiting for results. Shawn had some blood tests last week, that have to be processed at the Mayo, so probably won't be back until next week sometime. Also an MRI on Tuesday.

Yesterday he saw his U of C hypertension doctor, who is keeping him on the current cocktail of blood pressure medicines, with instructions to keep monitoring it and let him know if there are any changes. For now, the spikes remain in the 160 range, much much better than 240!

Meanwhile, we are buying a condo in Bloomington for Shawn to live in for the next few years. It's a two bedroom place which will make it much easier for us to come down and stay with him. In the last few days we had the inspection on the condo, Shawn found someone to sublet his current apartment, and we moved all his stuff into a storage locker. As always, the amount of stuff to move grew as we started packing it and the estimate of how long it would take kept increasing throughout the day. (Perhaps that trip when we were all the way across town before Shawn called to tell us we forgot to get the KEY didn't help... but that was just one of many trips!)

Now it's all moved, Shawn's staying in the basement apartment of one of his very generous friends from his support group, and we close sometime next month.

Waiting for the train

2009-08-21T17:43:00.001-05:00

I don't know if this little guy paid full fare or not, but it
certainly looks like he's waiting for a train!

New doctor, more tests

2009-08-17T17:44:00.002-05:00

Shawn saw a neurologist in Bloomington today to talk more about neuromuscular weakness. He has some ideas and more tests to do, including blood tests and another MRI of the neck.

MRI is scheduled for next Tuesday, and he sees his doctor in Chicago on Wednesday. We are on our way back to Chicago now. We will drive back down next Monday, then bring Shawn back to Chicago after his MRI on Tuesday. And then he'll fly back to Bloomington after Wednesday's Chicago appointment.

I think my car knows the way between Chicago and Bloomington on it's own now.

Sent from my iPhone :-)

Funny sight, or maybe a little sad

2009-08-17T17:25:00.002-05:00

The building next to the neurologist's office this morning had a sign on the door: "Smoking Cessation Class Enter Here." Right in front of the door were four women standing there - you guessed it - smoking.

Perhaps they were working up the courage to go in? Or maybe acting as a picket line to discourage others from entering?

I would have taken a photo but somehow I think they might have been offended.

a new blog

2009-08-14T23:35:00.002-05:00

I saw the movie Julie and Julia last weekend, and it made me start thinking about starting a new blog. You can go there to read more about some of the other thoughts I had that made me want to start it - but the basic idea is that on this other blog - Search for Blessings - I'll pick a topic each day that is something Im thankful for, show a photo and write about it.

Go follow me there. Maybe it will make you start thinking of all that's good in your life as well.

a week of phone calls

2009-08-08T23:07:00.005-05:00

After a full week of phone calls, Shawn finally has an appointment with a neurologist in Bloomington.

His neurologist in Chicago thought having someone in Bloomington would be a good idea, so he found a few names of people for Shawn to call. Also found someone in Indianapolis at IU Medical Center. The doc in Indy can't see him until October, so in the meantime Shawn called for an appointment with one of the doctors in Bloomington. When he called a week ago Friday, the office said he could get an appointment the following week but they needed the pulmonary function test from his pulmonologist before they could schedule the appointment. By this time it was late on Friday afternoon, so first thing Monday he called the pulmonologist's office.

Monday is the first day of a week of phone calls. On Monday, Shawn talked to a nurse at the pulmonologist's office who didn't seem to understand what he was asking and kept having him repeat phone numbers. The next morning when he called the neurologist's office they hadn't received anything. So he called pulmonologist's office again, talked to same nurse, still didn't seem to be connecting. She claimed the number he gave her didn't work, although he's now called it two or three times himself. She takes down the numbers again. Wednesday after finding out still nothing at the neurologist's office he calls again, gets a different nurse who said he'd been dealing with a temp nurse the last two days. This new nurse is much more on the ball and gets all the info and faxes it to the correct office. Another call to neurologist and sure enough, they now have the test results, but they still need a referral form filled out and faxed back. Call to pulmonologist to find out they don't have a copy of the form. Call back neurologist to ask them to fax the form so that pulmonologist can fill it in an fax it back...

FINALLY - on Friday, all the right paperwork is in the right place and they schedule an appointment for Monday, August 17. Dave and I will drive down next weekend and stay for the appointment.

pulmonary function - moderate to severe neuromuscular weakness

2009-07-30T11:18:00.002-05:00

Shawn just talked to his pulmonologist. His pulmonary function tests last week showed that he had moderate to severe neuromuscular weakness. Next step will be back to neurologist to discuss this.

The pulmonologist also thought that he should do a sleep study, to see if he might benefit from using oxygen while he sleeps.

does anybody really know what time it is?

2009-07-30T09:35:00.004-05:00

Dave and I are in Bloomington; this morning Shawn had an appointment with an oral surgeon to have a biopsy of some spots on his tongue. The appointment was for 9:00. We were going to pick Shawn up at 8:30 so we'd get there with plenty of time to fill out the paperwork that comes with seeing a new doctor.

We woke up, went to Bloomington Bagel for a quick breakfast and got back to the car at about 8:30. I called Shawn to tell him we were running a few minutes late and would be right there. He was sound asleep. His phone was set to wake him up at 8:00 but it said it was only 7:30. I looked at my phone which also said 7:30, very confusing. Dave insisted that it really was 8:30, so we went to the front desk and asked what time it was. They verified that it was indeed 8:30. So I called Shawn back and told him to wake up, we'd be right there.

We drove to the surgeon's office, out past the mall. Pulled into a place that said "Dental Office" except that wasn't the right place. Finally arrived at the correct location at about 9:01.

The good news for the day is that the oral surgeon doesn't think he needs a biopsy at this point. He said to come back if there are any changes, otherwise he wants to see Shawn again in three months.

Our phones are still showing the wrong time - so to know what time it is all I have to do is look at the phone and then add an hour. OR, I can look at my watch and add an hour (since the watch is still on Central time). At some point I assume the phone will be correct and I'll still be adding an hour at which point I will again not know what time it is.

But for the moment, I'd have to say that the answer to my question above is: "does anybody really care?"

30 hours in Chicago

2009-07-23T15:06:00.004-05:00

Shawn's latest visit to Chicago is now over. He arrived yesterday morning at 8:45an and left today at 12:45pm - a total of 30 hours. Nothing like having a long leisurley visit! (Although we did manage to have a most enjoyable dinner with some friends last night, so we did at least get in a little bit of quality time. Barb and Jerry - thanks for an incredible meal!)

Yesterday he saw the doctor from the U of C hypertension clinic, who has changed around his blood pressure medication - changed the patch to a pill form of Clonidine at a higer dose; raised the dose of Bystolic, and swapped the three other meds to three new ones. He'll be monoriting the effects of these changes in the next few weeks and will be seeing Shawn again in a month.

This morning he had a pulmonary function test, will be talking to the pulmonologist once he gets the results of that test.

And Zeke got a brief glimpse of Shawn as well! He's looking around the house tonight trying to figure out why he's not still here. Oh, wait, that's what I'M doing...!

Surgeon report good; new round of doctor visits next week

2009-07-13T18:17:00.004-05:00

Very busy weekend - we got back from New Jersey Friday morning, went right to the surgeon's office at U of C from Midway Airport. Actually, we went in shifts - we were still waiting for our bags when we should have been leaving, so Shawn went with Dave to the doctor, I followed along 15 minutes later by cab after getting the bags.

The surgeon says everything looks fine, just healing slower than usual but that sometimes happens. He examined the CT and said he doesn't see anything to worry about at this point.

Shawn and Arie went back to Indiana last night. Shawn will be back again next weekend for some FUN - we have tickets to see Rascal Flatts at Soldier Field Saturday night.

Then he'll be back the following Wednesday for more doctor appointments from the U of C crowd - hypertension center on Wednesday July 22, pulmonology on Thursday the 23rd. Looks like he'll be switching medicines yet again in the never ending attempt to get his blood pressure, tachycardia, and swelling under control.

and a full moon to end the day

2009-07-08T23:42:00.003-05:00

as if the sunset wasn't beautiful enough, a few hours later we were treated to a spectacular moon rising over the ocean.

Sunset at the Jersey Shore

2009-07-08T19:36:00.002-05:00

Shawn and I are at the Jersey Shore, where we keenly feel the absence of my grandmother. Today we watched my nephew take a surfing lesson. Tonight we went out for dinner, leaving just as the sun was setting over the bay.

ER this morning, Ribfest tonight!

2009-07-03T13:31:00.001-05:00

Shawn and Arie came back to Chicago this morning, they took a train from Indianapolis - tonight we're going to Ribfest in Naperville to see Heartsfield. Not sure if they'll play Shawn's song or not, but even if they don't, it will be lots of fun.

We weren't sure for awhile whether we'd make it or not, as we picked them up from the train station and went right to the ER...

The last few days Shawn's scar has been hurting again; on Thursday he went to the clinic at IU. They said the skin didn't look infected, but he should see his surgeon who might want to do a CT. He called the surgeon and got an appointment for next Friday. Late last night, it started hurting more and was a very bright red.

This morning when we picked them up, the scar wasn't as bright red as it had been last night, but was still hurting much more than it had been on Thursday. And of course, the surgeon's office is closed today.

So we went to the ER at Northwestern, where they took blood and did a CT. No obvious sign of infection so they released him. We'll see the surgeon next Friday, and meanwhile we're still going to make it to Ribfest tonight (Shawn will be going backstage, maybe possibly also making an appearance onstage.)

I'm glad we're still going to make it to Ribfest, and even more glad that things are looking ok with the scar. Also, we now have a copy of the CT to give his surgeon next week.

A, A, B, C, D...

2009-06-26T14:51:00.006-05:00

It's been a rough few weeks for Shawn. Possibly in part due to the hot weather, which he doesn't tolerate well. Also my grandmother, his great-grandmother passed away last week. And finally, the clonidine, even on the higher dose seems to not be working. Put those all together and he's been feeling worse than ever.

As of today, he's adding one more medication to his alphabet of blood pressure meds - an ace inhibitor. So now he has an Ace inhibitor, Alpha blocker, Beta blocker, Calcium channel blocker, and Diuretic. :-( With all that, you think he'd have the blood pressure of a zombie, but actually when he's not having a spell it still stays right at the top edge of normal.

The fact that the clonidine (catapres) isn't doing anything at all seems to suggest that this is not hyperadrenergic flushing. Not sure exactly what that leaves us with, but the doctor at the Mayo, or one of the other two who his doctor has contacted seems to be who he needs to see next. So we're waiting for a response from any of them, and hoping that the latest addition to the medication will help in the meantime.

more meds - and some good news!

2009-06-09T23:31:00.000-05:00

When he first started it in late January, phenoxybenzamine was doing a great job of controlling Shawn's blood pressure during spells - the first few months, the highest systolic reading was 150. Then it started breaking through - 160s, then 170s...180s, 190s... then back into the 200's. A few weeks ago he was weaned off of phenoxybenzamine and onto clonidine. The hope is that clonidine will be more effecient, have less side effects, and be easier to take - now that the weaning process is complete, he has a weekly patch. Unfortunately, it isn't as impressive as we were hoping; it's now being increased, and he's still on three other drugs in addition for the blood pressure. In fact, I realized this morning he's working through the alphabet of drugs - he's now on an Alpha blocker, Beta blocker, Calcium channel blocker, and Diuretic. :-(

And I have one more pair of drug names to add to my ever growing list - clonidine = catapres.

Besides the medicine switch, his doctor is contacting three other docters in the US who are doing research on damage to the sympathetic nervous system, which might be the cause of all this. The tests needed to determine that are only available in these three places.

This Friday he saw his neurologist who also thinks we should be seeing one of these three doctors - and his top choice is the one who's at the Mayo. So at this point, we're waiting to see if / when this doctor can see him. Shawn was less than thrilled with the idea of going back there, but as he said "as long as it's a doctor who is interested in seeing me" maybe it wouldn't be so bad.

So what about the good news? Well, it seems like every time Shawn's in town all he does is go see doctors - but this trip was different. The band Heartsfield is just starting to record a new CD, and they invited Shawn to stop by the studio while they were recording. Why would they do that? Well, one of the songs on this new CD will be one of the songs Shawn wrote - "Ridin' on the Rim"! So he spend Friday afternoon in Burr Ridge at the recording studio and had a wonderful time. He was in great awe of all the guitars at the studio, some of which he got to play.

Shawn's next visit home will be on Friday July 3 - Heartsfield will be playing at Ribfest in Naperville - and we'll all be going to hear them, which should be lots of fun. It's nice to have a trip planned that has nothing to do with hospitals or doctors or more tests.

Happy Mother's Day

2009-05-11T07:43:00.003-05:00

Shawn was in town this weekend, which was a great mother's day present for me. And yesterday, he cooked breakfast for me - as you can see, Zeke was trying to help.

He made a salmon and portobello mushroom frittata, which was excellent. And it was just nice enough to eat on the patio. All in all a very nice morning.

All that and he actually cleaned the kitchen after he was done!

See other photos from the weekend.

He and Arie drove back later in the day, they're now back in Bloomington.

Where We Are

2009-05-08T22:08:00.002-05:00

As you all probably know, we did a scan of the neck and a PET scan to see if that would give us any new leads as to what we can treat. The hope was that there was a small tumor in the neck called a paraganglioma but the results were negative for this. The PET scan also did not highlight any other tumors. Meanwhile, in order to rule out the Neuron Specific Enolase elevation as being a false elevation, the doctor repeated that test. Indeed, the NSE test was not a false positive as it was again over twice the normal number.

Where we are now is in a state of disappointment and frustration. While the idea of a tumor seems scarier, the truth is that it's not. Tumors are readily curable while at this point, the other disorders we're looking at are more treatable instead of curable. NSE can be elevated with certain cancers, diseases that are doing vascular damage and diseases that cause brain damage.

The next test they need to run is only offered at the Mayo Clinic, University of Toledo and somewhere else. Therefore, we're waiting to here when and where we're going for that. So while the lack of anything notable on the scans is frustrating, at least we still have some direction with the NSE elevation. We'll post more as soon as we know what's next.

correction

2009-04-30T12:59:00.005-05:00

Corrections from my father - a retired pharmacist:

Sorry -t(e)razosin and dibenz(y)line----but you are doing good for an amateur-----Dad

I still maintain that I know how to pronounce them all. :-)

And I like the observation from Jeff - I may know things I don't want or care to know, but at the moment we still don't know much about that which we care very much about.

Knowledge I never asked for

2009-04-29T20:38:00.003-05:00

When Shawn was young, I found myself memorizing many of the books I read to him - not that I tried to, but after reading the same book night after night, it was just THERE. It came in handy when I wanted to read in the dark - I didn't need to look at the words! All these years later, I can still recite many of the Dr. Suess books line for line -

"Big A, little a, what begins with A? Aunt Annie's Alligator, A, A, A."
"I would not, could not, in a box. I could not, would not, with a fox. I will not eat them with a mouse, I will not eat them in a house. I will not eat them here or there. I will not eat them anywhere. I do not eat green eggs and ham. I do not like them, Sam-I-am."
"And here's a new trick, Mr. Fox. Socks on chicks and chicks on fox. Fox on clocks on bricks and blocks. Bricks and blocks on Knox on box!"
and my favorite from Fox on Sox: "Through three cheese trees, three free fleas flew. While these fleas flew, freezy breeze blew. Freezy breeze made these three trees freeze. Freezy trees made these trees' cheese freeze. And that's what made these three free fleas sneeze" (Oh, I so loved to read that out loud. Shawn used to be giggling by the end.)

So anyway, the point is that it wasn't something I tried to memorize, it just became part of my common knowledge base with no work whatsoever on my part.

Likewise, now I know both the brand and generic names of way too many medicines, not to mention I know how to spell and pronounce them too.

phenoxybenzamine = dibenzaline
neurontin = gabepentin
furosemide = lasix
hytrin = tarazosin
cyproheptadine = periactin
metoporolol = lopressor

I could go on and on (and on) but I think you get the point. This isn't really knowledge I wanted in any way but it's there anyway.

I hope I can rid my brain of this knowledge someday. I hate to think of myself 30 or 40 years from now still knowing how to spell or say phenoxybenzamine or know what it's used for. (Unless I am playing "drug word" scrabble, that is - then this knowledge might be kinda handy.)

On the other hand, I hope I still remember "Camels on the ceiling, C, C, C" and "Be sure when you step - step with care and great tact. And remember that life's a great balancing act. Just never forget to be dexterous and deft, and never mix up your right foot with your left."

PET scan tomorrow

2009-04-28T20:56:00.002-05:00

Shawn has an appointment for a PET scan tomorrow at 3:30. This wasn't scheduled until late in the day, and it needs pre-approval, which the doctor's office will be working on first thing in the morning - assuming that goes ok the scan will be tomorrow at 3:30.

MRI part 2

2009-04-28T16:49:00.001-05:00

We are back for a followup MRI - while Shawn was having the ultrasound his doctor called and told us to go back to the MRI as soon as he was done; they needed some further scan done. So Dave and I are here in the waiting room and Shawn's back having MRI part 2.

Sent from my iPhone :-)

Cloudy sky this morning

2009-04-28T12:52:00.002-05:00

The sky this morning looked more like a painting than a real sky. It made me wish I had my "real" camera with me, but here's a photo from my iPhone.

They just took Shawn back for his MRI. We are supposed to get preliminary results later today, as it will determine whether or not he'll be back tomorrow for a different scan.

After this, we go back to a different building for an ultrasound, then to the lab for blood tests.

spring is really on its way

2009-04-26T21:31:00.009-05:00

While the weather this weekend seemed more like summer, my back yard reminds me it's still just spring. In fact, driving around the last few days I kept feeling surprised that so many trees were bare as I was wearing sandals and short sleeves.

But my back yard is all about spring. My crab apple tree is just getting ready to erupt. This morning the blooms were all closed; tonight some have started opening. The pictures below were both taken today - first one this morning, second one this afternoon.

That tree occupies most of my back yard, which wonderful on really hot summer days as it provides shade for the whole yard. It also makes gardening tough because there is so much shade. But these few short weeks when it blooms are clearly its finest hours of the year.

Interesting ad on the el

2009-04-21T22:33:00.001-05:00

I have NO idea what this is an ad for, but it created an interesting
sight from inside the train.

appointments set for April 28

2009-04-20T17:40:00.002-05:00

Doctor -11:15-12:15

MRI - 12:30 -2:00

Ultrasound - 2:30

More tests next Tuesday - April 28

2009-04-20T13:13:00.002-05:00

Shawn will be back in town next week for another round of tests - MRI, ultrasound, blood tests. So far, we have the doctor appointment and MRI scheduled, still waiting to hear from ultrasound. The plan is to get all three on Tuesady, April 28; so far we have doctor appontment at 11:15, MRI at 12:30.

small pleasures - what makes me smile :-)

2009-04-16T22:08:00.003-05:00

The last post was about mountaintop moments. That got me thinking more about all the smaller moments. Here are some of the smaller things that I enjoy:

A call from Shawn. On my iPhone, the photo I have of him is one I took right after he got his acceptance letter from IU. Every time he calls, I see his smiling face and remember how excited he was when he received that.
The smell of spring - especially the hyacinths and lilacs...I have hyacinths starting to bloom in my yard now, and the lilacs have buds on them.
Sunrises and sunsets. A few times in the last month, I've been driving somewhere facing east right at sunset - and the reflection of the sunset in the buildings downtown, especially the Sears Tower, has been incredible. I have tried a few times to get a photo of this but never was in exactly the right place with my camera. I'll have to keep trying.
Taking photos - there is something so rewarding about capturing a really beautiful scene - the process of taking the photo actually allows me to see it more fully and appreciate it more. And then there's the lasting memory it creates...
The smell of lavendar - it's right up there with hyacinth and lilac in my list of favorite smells. I've tried growing lavendar a few times in my garden but it never seems to take; too much shade in my yard once the trees bloom. I put lavendar sachets in my dryer and love the way it makes my clothes smell. (I get them at Trader Joes)
Trader Joes! I used to drive to Hinsdale to shop there and am so happy that they now have a store in Oak Park. They have such a great variety of products, and such reasonable prices.
My dog Zeke. I love sitting on the couch or my purple chair and having him curl up on my lap. I also don't mind walking him when the weather is nice. I'm not a big fan of his bark when I leave the house though.
Books - and of course, what am I doing on the couch or chair? I'm reading a book. Although I have to admit the number of books I've read has greatly declined these last few years; it's been much harder to focus. I suppose I've compensated for that by writing more - which is what I'm doing right now. And by reading more about various neuroendocrine tumors. I should definitely go back to reading fiction, the medical world is too scary a place.
OK, I'll admit it. I am a geek. My computer makes me happy. Not my work computer, but my home computer - the 24" iMac that I'm using right now. A few years ago a screen this big would have been outrageously expensive and yet this computer costs less than the computer I bought five years ago.

mountaintop moments

2009-04-06T22:04:00.005-05:00

At Shawn's support group today, we each wrote about a 'mountaintop moment' - a moment of great joy in our lives. And I was very pleased to realize that I had SO MANY to choose from.

Some of the ones I considered but didn't pick:

the moment I learned that I was pregnant - at 3 am when I woke to go to the bathroom and thought this must be the first pee of the morning so I should take the pregnancy test now
the moment of Shawn's birth. Certainly not the moments leading up to it, but that second that he was born and I learned that love at first sight was indeed possible and very powerful
the years when Shawn was young, hanging out on the sidewalk with the neighbors and watching him play with the other kids, especially this time of year when the weather started getting nice and everyone came out to play.
walking him to school in the mornings, and having him come home from grade school for lunch on days when I worked at home
moments from my own childhood: playing in my own neighborhood until after dark; playing flashlight tag with my cousins at my grandparent's house in WV; hanging out at the beach with my other cousins at my grandparent's house in NJ
Falling asleep on the beach in NJ with the waves in the background, the sun shining down on me, the incredibly soft white sand beneath me.
the first time I went water skiing - that incredible feeling when it WORKED and I was up on the skis
jumping out of an airplane when the parachute also WORKED and I realized I really did that
So many moments of downhill skiing - the first real run when I finally figured out how everything in the lessons came together and it was a little like magic how I flew effortlessly down the mountain when just a moment before I was working so hard and nothing was right.
that time skiing at Sunshine in Canada, the day when the clouds were low and we were quite literally skiing through them- I remember feeling like we were skiing in heaven.
The views from the alps - even the run right BEFORE the one in which I fell and broke my leg at Chamonix. Not that last run though; that's one of those moments I wish I could roll back and do just a little differently!
So many great moments in so many great countries - watching the sun rise over Jerusalem from Kibbutz Tzuba; lying on the bricks in Sienna with the sun shining down on us; sitting and drinking wine in Venice waiting out a pouring rain; wandering around in a garden in Japan; climbing the steep hill in Edinburg while still on crutches, eating tapas in Barcelona, riding bikes in Amsterdam, dinners at the town square in Prague... I could go on and on and on...
And the moments I chose to write about - listening to Shawn play music - any of the thousands of times from when he was very small to last night when I heard an early recording of the latest song he is working on. In fact, my best memories of our life in England was right after I broke my leg, all the times I'd sit on the couch in our flat and listen to him play. That stands out above all the rest of the trip as my favorite memories of our life in the UK. Other musical moments: Listening to him perform his first impromptu public concert on the piano at a museum when he was six, all the hours in the recording studio, his performances in Nashville...he and Zak playing in our hotel in Israel, playing in our hotel in Nashville, playing at writer's night... playing in our living room while I sit on the purple chair and Zeke sits at his feet.

And those are just the ones that come to mind right now - if I think about it tomorrow I'm sure I'd start thinking of a whole different set of moments. Life is indeed filled with wonder and joy. When things get scary and bleak, I'll try hard to hold on to a few of these moments.

An eventful week

2009-04-06T20:05:00.002-05:00

So we're back in test mode as one of the strong suspicions is actually a type of neuroendocrine cancer called paraganglioma. Because of that, we're doing multiple scans to try to see if we can locate one. Also, after having a fever for the last few days, I went to the IU Health Center today because the incision site became infected so I'm doing antibiotics for the next 10 days. We'll start doing tests in the coming weeks so we'll see what they have to say.

Back in Bloomington for the week

2009-04-06T18:11:00.007-05:00

Dave and I are back in Bloomington for the week; we will be holding a seder at Shawn's appartment on Wednesday. We decided to come a few days early so that we could attend Shawn's support group with him tonight. (Also, I had enough reward points at Marriott to get three free days here, so I figured I'd work from the hotel for a few days before taking some vacation days for the rest of the week.)

I'm very glad we came when we did. When we got here last night, one look at Shawn's incision was enough to tell that it had become infected. He said he thought it was just the way it was scabbing over, but it certainly did not look at all right to me, not to mention he had a low grade fever! So first thing this morning, he went to the IU clinic where he spent about three hours - they took lots of vials of blood for tests, called both his surgeon and endocrinologist in Chicago, took an x-ray, took a second x-ray, cleaned up the wound, gave him antibiotics, and he has an appointment to come back tomorrow. There was initially some worry about whether it had gone into the bone, but at least initial results look good.

Finally left there in early afternoon, we had lunch and then went to his support group, which was a wonderful way to end a harrowing day. I'm so grateful to all the people there, it's been a huge help to Shawn and a huge relief to me knowing all these wonderful people are there to help support him.

New Updates

2009-04-01T20:15:00.003-05:00

Well a lot has happened the past few days. Before I left Chicago, my Endocrinologist at Northwestern ordered a blood test he had read about called a Neuron Specific Enolase test which is a hormone that is secreted in neuroblastoma cancer, small cell lung cancer, carcinoid cancer and a few others. The test came back last week elevated (normal being between 3-8 mine being 25). This positive test result is huge in narrowing down what has been going on. My doctor has been emailing and calling numerous doctors and is presenting my case tomorrow at Endocrine Grand Rounds at Northwestern University Medical School. At this point, he has been in contact with my Endocrinologist at University of Chicago who strongly think that it's a neuroendocrine cancer similar to Carcinoid called Neuroblastoma as Carcinoids usually cause low blood pressure and Neuroblastomas cause high blood pressure. He's trying to figure out a list of tests that need to be done to find exactly where these things are but at this point, we are getting closer to diagnosis and treatment.

In a million years on my 18th birthday smoking my celebratory cigar, I could never have pictured the trials and tribulations my family and friends and I would have to go through in the coming years. More over, I never would have expected to be relieved by positive test results especially ones that are major red flag tests for cancer. However, I'm here now and this is the reality and I'm just hoping to be able to start whatever treatments I have to do soon.

Also, these past few weeks have had some positive events too. About a week ago, I was called by a major LA producer who officially wants to buy my song Ridin' On The Rim for Heartsfield's upcoming Major Release. Life holds many surprises which we have learned quite well recently.

An early drive back to Bloomington

2009-03-22T21:13:00.008-05:00

We woke up early this morning to get on the road, left Oak Park at 5:20. The early start paid off - not only was traffic non-existent, but we also got to watch an awesome sunrise from the car.

Dave and I are staying here till Tuesday morning - tomorrow we'll help Shawn get groceries and get settled in. I think he's more ready for us to leave than we are to leave him.

See more photos here .

Do No Harm - Post from Shawn

2009-03-19T10:43:00.003-05:00

Yesterday we went to University of Chicago for follow up appointments. The overall message from the endocrinologist is that the tumor is there but at this point, he's not sure where it is. Our best bet is still that the spots in the lung are very small carcinoids but right now, they are too small to do anything to. He referred to any other extreme measures as doing more harm than good and he said his job is "to above all, do no harm". Eventually, I know this team of doctors will be able to cure this thing but right now, we're going to treat the symptoms and hope it helps.

We're going to Northwestern today for a few more exotic blood tests and then I'm going to get ready to go back to IU very early Sunday morning. One of these days, there will be good news to put up here.

Out to dinner!

2009-03-16T17:23:00.000-05:00

The weather is beautiful, Arie is here, and we are celebrating by
going out to dinner. :-)

Taking a walk!

2009-03-14T14:39:00.003-05:00

A nice sunny day here in Chicago - quite a change from last Saturday's deluge. Shawn ventures outside for the first time since we got home. He made it almost to the end of the block and back. Now he's taking a nap.

Tomorrow maybe a full block as long as the weather holds up...

thymic hyperplasia, no sign of a carcinoid

2009-03-13T22:59:00.004-05:00

Unfortunately the report from pathology is that while the thymus was too large and may have been contributing to breathing difficulties, it is not the location of the carcinoid that is still the best theory for what is causing the majority of Shawn's symptoms.

In fact, we had started to suspect this in the last few days as we've seen a few episodes that seemed awfully close to a spell. But it was hard to tell for sure, as he also had a temperature that could account for the flush face and with his level of inactivity the blood pressure wasn't overwhelmingly high.

Tonight as if there were any doubt, after his most active day since the surgery he had a full blown version with blood pressure of 204/89. As of tonight, he's now back on all the same medicine he was taking prior to surgery and we have an appointment on Wednesday with his endocrinologist to talk about next steps.

A boy and his dog

2009-03-12T15:26:00.004-05:00

Zeke is glad to see Shawn back home, and we're glad to see Zeke again as well. A HUGE thanks to Warren, Julie, Eli, and Rachel (and Ed) for taking care of Zeke this past week.

Shawn was awake and downstairs for quite awhile this morning, now taking a nap but about to get back downstairs as soon as he wakes up.

Wind is the Wonder Drug

2009-03-10T18:32:00.001-05:00

Our first day home has been both wonderful and rocky. Wonderful to be
back in our own beds, so much more comfortable than the hospital.
Rocky in that Shawn's temperature continues to dance around between
100 and 101. Briefly near 102 last night but no higher than 101 today.

The doctor said that the best guess at this point is still the lungs,
and to continue with the deep breathing exercises. Wind is the wonder
drug; he just needs to keep forcing it in his body.

We're all also suffering a little from sleep deprivation I think. It
took an awful long time last night to figure out all the meds he's on;
finally I got it all down on a spreadsheet so we could make sure he
got the right pills at the right times!

Last night I think he slept 6 consecutive hours which is about the
longest any of us have had since last week before the surgery.

He's napping now which means I should be as well.

Sent from my iPhone :-)

There's no place like home

2009-03-09T19:21:00.002-05:00

I think this picture says it all.

On the way home!

2009-03-09T17:29:00.001-05:00

Not quite timed well enough to miss rush hour, but we're taking local
roads. And Shawn is now sound asleep.

Waiting

2009-03-09T15:44:00.000-05:00

Oh yeah, and Shawn is ready too!

:-)

2009-03-09T15:35:00.000-05:00

Everyone is ready to leave!

2009-03-09T15:17:00.000-05:00

We're all packed up and ready to go - waiting for the nurse with the
final paperwork.

Going home today!

2009-03-09T13:08:00.001-05:00

Just got word that we are going home today!!! Not quite sure when,
one more set of vitals and a few more visits left first, but then we
are OUT of here!!!

Sent from my iPhone :-)

Long walk - the return

2009-03-08T16:31:00.000-05:00

L o n g walk

2009-03-08T16:23:00.001-05:00

Today Shawn walked all the way down this long hallway. Stopped and sat in the chairs at the very end for awhile and then came all the way back. Another trip planned for later today after a nap!

not going home today

2009-03-08T11:40:00.002-05:00

The night before last, Shawn had a fever of close to 104. It broke yesterday morning, but in the afternoon it started back again - although lower, only 102 this time. Last night they did lots of tests, some of which aren't back yet. His white blood count is elevated but stable since the surgery. When not on the oxygen his oxygen saturation is also still too low. At this point, the best guess is that his lung is still collapsed. So the order of the day is to continue the breathing exercises and walking and see how it goes. They won't release him until his temperature is down and O2 level is up.

more photos

2009-03-07T20:00:00.002-06:00

Some more photos from the last few days...

THANKS!!!

2009-03-07T14:50:00.000-06:00

A very hearty thanks to Susan for the edible bouquet (and balloon),
Hans & Cathy for the flowers (and balloon), Lori, Greg, Henry and Sam
for the monkey (and big balloon!). Also Karen's photos of Shawn and
Arie are helping to keep Arie here in the room with Shawn even while
she is in Indiana.

And thanks to all of you who have been sending us your healing
thoughts through your calls and emails and text messages and emails
and blog posts and facebook posts!!! We are truly blessed to have
each and every one of you in our lives. I don't know how we would get
through this without you.

Smile

2009-03-06T12:59:00.001-06:00

The balloon is from Lori, Greg, Henry and Sam. In the reflection you
can see Shawn getting a breathing treatment.

Rocking and rolling...

2009-03-06T11:41:00.000-06:00

Here he is, doing his job - walking AND breathing!!!

Doing a great job!

walk and breathe

2009-03-06T08:23:00.003-06:00

Shawn's job for the day: get pain under control, deep breathing, get out of bed and walk. That's it, all he has to do all day long is walk and breathe. May not sound like much but I think it's going to be a challenge nonetheless.

They just took out his chest tube this morning. Not much fun but now there's now one less tube in him. They are also switching pain medication today. Hopefully that will help him conquer both the walking and breathing.

Fun and games

2009-03-05T16:43:00.000-06:00

Shawn is out of recovery and already in a room! He's mostly sleeping,
wakes up for brief amounts of time and then slips back to sleep.

He has to take 10 deep breathes an hour on this fun contraption. The
little blue arrow at the bottom shows how far he can move it, just
below 500 so far.

The nurse said we're going to have him up and walking later tonight.

Surgery FINISHED! :-)

2009-03-05T12:14:00.003-06:00

Just talked to the surgeon - it's over and everything was fine; no problems with his blood pressure. The thymus is out and being sent to the lab, will be about a week until they know more.

He's on his way to recovery now.

Happy drugs

2009-03-05T11:37:00.001-06:00

Photo from preop earlier this morning. Actually I think this was just
before the drugs, obviously in anticipation of them though.

surgery itself just started

2009-03-05T10:56:00.001-06:00

just heard from the nurse; the surgery just started.

Take my thymus please

2009-03-05T08:01:00.001-06:00

We are here at the hospital waiting to go back to pre-op. Check out Shawn's cool pants - pajama bottoms actually. (when I saw these last week I just had to get them for him)

Shawn is anxious to get this show on the road so he can get his happy drugs!

a heart stopping moment

2009-03-03T09:52:00.002-06:00

This morning I called to pre-certify Shawn's upcoming hospital stay with my insurance company. I'm talking to a very nice woman who is talking to me and typing in the information she needs. She asks me to verify his name and date of birth and I do. All the sudden she says "Oh my god". Then "oh, no, I don't believe this" and "oh my". At this point she's speechless and I'm thinking something has happened to my insurance, they've dropped Shawn from the policy, or there's some clerical error but can't be fixed in time for the surgery... my heart is quite literally in my throat. I think at this point as all these things are running through my mind I'm also holding my breath.

Finally she says "I have a son with the same name and almost the same age - and I live a block away from you in Oak Park!"

Once I peeled myself off the walls and started breathing again, we continued the call. She's only lived there about a year so I don't think the two Shawns know each other, but it certainly is a small small world.

End of a long day

2009-02-27T20:08:00.001-06:00

Zeke is helping Shawn relax after a long day. I don't think they are
going to let him come help out after the surgery though.

ready for surgery

2009-02-27T15:32:00.003-06:00

Shawn came back into town yesterday afternoon, landing just after the worst of the thunderstorm passed by. (His plane actually arrived early but was then had to back up and wait while Midway's runways were closed for about a half hour. Our drive to Midway to pick him up was interesting - very heavy rain and lots of flooding on the sides of the road. At one point we were splashed with enough water that we couldn't see at all for a few seconds. But he landed, we picked him up, and he's now here in Chicago.

Today we were at U of C at 8:00 am for a chest x-ray; slight confusion over where to go and when we got to the right place another confusion over the order. All was straightened out quickly though, and everyone was very helpful and nice. Shawn liked the x-ray itself, over in a second rather than the hour and a half scans he's had recently!

After the x-ray, up to see the surgeon who talked more about what to expect. The surgery will take place sometime around 10am, we need to be at the hospital at 7:30. Surgery itself should take about 2 hours. We'll have the results from the biopsy of the thymus about a week later.

There are some private rooms and some 2-patient rooms, we won't know which he gets till he's ready for a room. (We can request a private room for $139 more a night, minimum fee of two nights. But even then it's not certain whether we'd get one. I think we'll take the luck of the draw and hope for the best.)

After the surgeon, we went to see the anesthesiologist. Shawn will most likely have an epidural to help manage pain post-surgery. They also talked about having an arterial line in during the surgery to continuously monitor blood pressure. Spent a lot of time going through his medical history, drugs he's on, etc. Then they took blood (Shawn gave a high rating to the nurse taking blood; didn't hurt and didn't leave a bruise!). Finally we were on our way. All in all, we were at U of C from 8-12.

We had lunch at Medici (Shawn and I both had calzone, very garlicky and very good! Dave had a burger). Shawn fell asleep in the car on the way home. We stopped to pick up a prescription at CVS and then Shawn went to meet a friend for coffee at Starbuck, which is where he is right now.

He goes back to school tomorrow. On Monday he's going to drop all but one of his classes and we'll go on COBRA since he'll no longer be a full-time student. But it may possibly only be for a few months. At the end of this year, a law called Michele's Law will go into effect. This law was first passed in New Hampshire in 2006; in October of 2008 it became a national law. The law prohibits insurance companies from dropping students from their parent's insurance policies for lack of full-time student status due to medical issues. My company is actually considering instituting the law in June. If that goes through, we'll only be on COBRA for two months - April and May. That will be awesome if it happens, but even without it he may be able to qualify for full-time student status again in June anyway; if all goes well he's hoping to take classes this summer.

He flies back into Midway on Wednesday afternoon; hopefully not in the middle of a rainstorm or a snowstorm. At the moment the weather forecast is for temperatures in the 40s and no precipitation, so all is looking good.

Less than a week before the surgery. One huge step in Shawn's journey...

Results back - no pheo

2009-02-13T19:03:00.004-06:00

The results of the nuclear scan are negative - there is no sign of a pheochromocytoma; surgery on March 5 can be performed as scheduled.

On the first day of the scan, they gave Shawn a little stuffed bear - you can never be too old to get healing power from a stuffed animal I guess.

Scan is done

2009-02-12T11:52:00.003-06:00

Well today was a MUCH nicer day - not raining and the sun is making a valiant effort at showing itself. Much easier drive as well; we left the house at 7:36 and were at the hospital at 8:06! A very easy drive when there's no traffic. We even had time to stop at Panera before his 8:30 appointment.

The scan was over a little after 10. Shawn says his arms get sore from having them over his head for so long, and today he had to interrupt the scan briefly for a coughing fit. But at least it's done now.

No traffic at all on the way back - the advantage of traveling mid-day! This photo was taken on the trip back to Oak Park - driving north on Lake Shore Drive. Soldier field is on the right and you can just barely see the Sears Tower over on the left, hiding behind the trees.

Now Shawn's playing Wii football, then taking a nap. After that we're going to buy some nice comfy pajamas and have lunch at Ditka's in Oak Brook. And then he goes back to IU tonight.

Surgery scheduled for March 5

2009-02-11T17:36:00.003-06:00

We met with the thoracic surgeon this afternoon who will be removing Shawn's thymus on March 5. He said that even in the absence of any symptoms, the size of the thymus would warrant watching it, but given the symptoms he's had it should just be removed.

The surgery will involve splitting open the breastbone and removing the thymus which lies just underneath. He'll probably be in the hospital 3-4 days. Then a followup appointment that next week after which, if everything goes well he'll be able to return to Indiana. But actually, it turns out that will be right at the beginning of spring break, so he'll stay home an extra week anyway; returning to Indiana after spring break.

This all assumes that the current nuclear scan is negative - the last part of that is tomorrow morning. Those results should be available in a few days.

So for now, Shawn will return to IU tomorrow night. He has a pre-op appointment with the surgeon and anesthesiologist on Feb 27.

We're all hopeful that this surgery will help resolve all Shawn's symptoms and he can finally concentrate on being a normal college kid!

Grey gloomy morning

2009-02-11T13:44:00.001-06:00

As you can see the drive to the U of C this morning was bleak. Traffic into the city was not great but Lake Shore Drive south to Hyde Park was empty. Got here just before 9.

So far today we've been in the waiting room at radiology, then to 5th floor DCAM to pick up a prescription, then to the pharmacy, cafeteria, back to the pharmacy, back to the waiting room at radiology. Shawn's in there now having his first scan, he should be out soon. Then we go back to the 5th floor for appointment with the surgeon. Sort of feels like we're going around in circles...

Good news though - the scan started a little after 12:30 rather than 1, so we should make it to the 2:30 apointment without having to rush.

Happy 20th Birthday Shawn

2009-02-07T18:17:00.003-06:00

Here's what Shawn looked like 20 years ago today. He's grown a little since then. Shawn was born 6 weeks early at 6:46 pm on Feb 7. He weighed 4 lbs, 15 1/2 oz (2260 grams). I only saw him for a few seconds before they whisked him away to the NICU. My second sight of him was a few hours later - he had tubes in his nose to help him breathe. And his little tiny hands were on either side of the tubes, as if to pull them out. I took one look at him and knew he was a fighter and he'd be just fine.

He's still a fighter and he's still going to be just fine - this fight might be take a little longer but it is going to be just as successful.

Nuclear Scan, Thoracic Surgeon Appointment

2009-02-05T12:42:00.004-06:00

Next week Shawn has an appointment with a thoracic surgeon to talk about surgery on the thymus. One concern with surgery is that it would be dangerous if he has a pheochromocytoma. So next week he's also going to have an MIBG scan to be certain that the enlargement on the adrenal gland is not a pheo.

So next week's schedule is:

Tuesday night - fly to Chicago
Wednesday
- 9:00am be at U of C for injection,
- 1:00 first scan. Scan lasts exactly 1 1/2 hours
- 2:30 meet with thoracic surgeon. (Yes, cutting it a tiny bit close there, but the surgeon's office knows that he's in the scan until 2:30. We'll call them when we're on the way up)
Thursday - second scan (not sure what time yet)
Thursday night - back to IU