correction

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

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

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

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

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

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

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

Doctor -11:15-12:15

MRI - 12:30 -2:00

Ultrasound - 2:30

More tests next Tuesday - April 28

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 :-)

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

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

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

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

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.