Sunday, December 26, 2010

Happy Happy!


Just a little note of gratitude for all of the wonderful people in my life. :) Best wishes for a wonderful and healthy 2011.

Tuesday, December 21, 2010

Merry Christmas, My Friends!


It's the most wonderful time of the year!

I hope everyone is having a wonderful holiday season. I feel a great sense of renewal this year, celebrating my first Christmas with my new immune system. :)

Steve arranged a little birthday celebration for me (see pic), reserving a private room at my favorite restaurant so that I could be with my close friends and family. It was such a fun evening, and we could just relax and chat for hours.

I am planning a fun gathering for Christmas, as well. I admit it's hard to get it all together, but that's true for everyone, and I am so grateful that I am able to try! Can't wait! Almost ready...

Last thing to do is build a small dock out front so that arriving guests will be able to "park" despite all of this rain. :)

Monday, December 13, 2010

Going Dutch!


Steve has paid his dues with me in so many ways, but perhaps none so great as riding in the hunters.  For the past 3 years (since I was so rudely removed from tennis!), he has diligently taken riding lessons so we could once again share in sport.  Dressed in his coat and tie, he has successfully competed in the hunter classes at the horse shows, stealing only a brief yearning glance now and then at all the OTHER men riding the big jumpers (in regular shirts!) in the grass field.

Now Steve's time has come.  We've gone Dutch!  We purchased Alexander, a 14 year old Dutch Warmblood jumper who had become a bit homeless after the death of his owner last year.  His circumstances and ours aligned just perfectly, and we are a two horse family.  :)

I have been riding Xander as well as Atlas, and having a great time.  My scleroderma does interfere with my riding, and poor Xander is now "bitted up" like my good old Atlas in a stronger port-style bit.  Because I am not able to close my fingers on the reins, I need more control with a strong bit in the horses' mouths.  I tried one day to ride Xander in the jumper field, but my endurance is not there yet.  I am still quite short of breath and need short courses and frequent breaks.

However, just when I was feeling sorry for myself and feeling like I wasn't making progress, I happened to send a video of myself on the new horse along to my doctors in Chicago.  I email with them quite a bit, as I get my labs drawn here and communicate results back to them, so I attached the video on a lark.  I was super surprised to hear back right away--they were quite impressed!  Dr. Burt is hoping to use the video in an upcoming presentation on stem cell transplants.  :)  I made a short version for him, which you can view above, and I hope it helps to inspire hope in others with this disease.  It really felt great to know that I was actually ahead of schedule.

Except on my holiday cards.  :)

Wednesday, November 24, 2010

Happy Thanksgiving!


I can hardly believe that the holiday season is upon us.  When I first came home from the hospital, the days dragged by in slow succession.  This past month, as I've tried (unsuccessfully) to catch up a little, it seems the days went by in a blink.

My amazing tennis team, with whom I have not been able to play for over 2 years now, had a 100 days party for me!  I was able to make my first "public" appearance in--if not a crowd--at least an intimate group of healthy people.  It was such fun to see my good friends and catch up on everything I've seemed to have missed of late.

I've taken in a boarder, of sorts... a friend called with stories of a beautiful homeless horse; so, unable to resist, I welcomed him into my life... if only for a while.  He's in the photo on this page, with my trainer aboard.  We will see.  It's the first truly crazy, impulsive, shall we say "Holly-thing" I've done in several years.  It felt GREAT!  The excitement of seeing him come in off a trailer in the dark, unsure what color he might be, and then riding him these last few days and seeing what a gem he is... it makes me feel young at heart.

The only thing that doesn't make me feel young at heart these days is my dang heart.  I saw my pulmonologist today to review the latest echocardiogram.  She suggested a referral to the heart failure clinic.  My heart is showing "global hypokinesis" and a low "ejection fraction."  Although initially assumed that these issues were related to the lung disease, and may still be, several doctors have now suggested that scleroderma is in my heart causing the same stiffening of the tissues.  This does not allow the heart to relax properly when it needs to... like... every beat.  So, this can lead the heart to fail as a pump.  Medications could be changed, things could be addressed, but not with impulsive Holly (who needs to get right back to the stable) driving this car.

I talked my doctor into another 4 month check.  These data seem pretty similar to August, and I still have to hope that the hit my heart took during transplant will recover.  After all I went through to regain my health, I just need to keep hoping that the heart can bounce back.  It got hit from all sides--high pulmonary pressures, interstitial lung disease, huge chemo doses, and now this scleroderma infiltration (presumed) causing diastolic dysfunction.

But my heart told me what it needs.  It just needs more time at the stables, to let go of it all and do some riding.  :)

Happy Thanksgiving to all.  I wish I could be with you, but know you have my love, and that you are the blessings I count on this day and every day.

Wednesday, November 10, 2010

Life to the Theme From Star Wars

It's a typical evening at the H-W home.  Luke and Jake are practicing piano.  Jake is learning... you guessed it... the Theme from Star Wars, which I have come to know and love.  :)

It's wonderful for me to see life returning to its usual rhythm, with its usual ebbs and flows.  I feel such an incredible weight off of my shoulders now that the stem cell transplant is behind me.  I know that I have done everything that I can do medically to overcome this disease, so I am freed from the worry and angst of what I should (or shouldn't) do next.  I still take my handfuls of pills each day, and still have plenty of symptoms, but that nagging feeling of impending doom just seems to have floated away.

It may have found you, or someone else I know and love.  Possibly the worst thing about having scleroderma is the conversation I have all too often... it always begins with, "I know this doesn't compare to what you are going through..." and ends in any number of personal crises.  I am sorry if I haven't been the kind of friend and listener I once was, but I promise--I'm back.  Bring it on.  If I can help, if you need a shoulder, or just a good ear, please let me know.

And for those who haven't seen me lately, I'm finally growing some hair!  And eyebrows!  And eyelashes!  I don't have a real photo, so my Mac Photo Booth will have to do for tonight.

Sunday, October 31, 2010

Happy Halloween!

With most of my spooky times behind me, I am enjoying a slow recovery from the stem cell transplant.  :)

My hair is coming in, my eyebrows are back, and I even had to shave my legs!  My gut is recovering, and an annoying cough seems to be the last remnant of the two bouts of pneumonia.

I saw my specialist at UCLA last week, and my skin score had worsened a bit from the last visit in September.  I was not shocked--in fact, I was more surprised when it was so improved last time.  I had never expected improvement, just hoped for stabilization of the disease.  I recall that my skin score improved briefly after Cytoxan last year, as well, so perhaps the temporary loosening was also related to the pre-transplant Cytoxan.  I am hopeful that it will stabilize.

I have been exercising a little, with the heart rate still a limiting factor.  Further research suggests it is also a temporary post-transplant phenomenon.  I am advised to wait 6 months and it will normalize, but my doctor is checking an echocardiogram just to be sure.  :)

The boys, however, just don't stop moving.  Jake had a huge win in a tennis tournament in Palm Desert this weekend, and Luke was a consolation round finalist.  It was great fun to be outdoors in the warm, breezy, desert air watching the boys play beautiful tennis.  After the long weekend away, I was ready to collapse, but the boys inspired me to help toss up some Halloween decorations--and away they went trick-or-treating!  It was all I could do to answer the door.  I got some funny looks when I forgot my hat...some of the kids must have thought I went all out for Halloween!

Tuesday, October 19, 2010

Back in the Saddle

I am thrilled to report that I was able to ride my sweet Atlas last week--not once, but twice!  I rode for just a few minutes, but dang I was sore!  I have lost so much endurance and muscle since this photo was taken just a few short months ago in May.  However, that is a small price to pay for the potential benefits this stem cell transplant may bring.

One issue which is keeping me from increasing my exercise program more quickly is persistent tachycardia (fast heart rate).  I'm not sure if it is a double edged sword--my deconditioning is leading to the tachycardia which limits my exercise capacity... or if the cardiac involvement of my scleroderma is leading to the tachycardia... or if the Cytoxan-mediated weakening of my heart is more persistent than my doctors in Chicago had hoped.  My gastroenterologist discussed the issue with me at our visit this week.  She was concerned enough to suggest cardiac testing, but I admit I'm hesitant given how much testing has been done on my poor heart already this year.

So I continue with my short little exercise routines and hope for the best.

Promised updates: Jake lost in the quarterfinals of his last tournament, and Luke's been rained out.

Yes, it's true non-Southern Californians!  We've had a week of drab and rainy weather!  You can gloat away.

Monday, October 11, 2010

Baby Steps

The stem cell transplant is very tough on the body as a whole.  The transplant itself, as well as the many complications I have experienced, has left my body much weaker than before.  (see photo--just kidding)  When I saw my rheumatologist last week complaining about my level of deconditioning, she advised me to start back slow and suggested 2 minute workouts each day.

I have been trying to do a little more each day, and managed a 5 minute workout on the elliptical today at level 0.  My heart rate was between 140-151 the whole time.  I can't believe how out of shape you can get in a just a couple of months!  And, yes, it's now 2 months since the transplant.  :)

One of my neighbors had a stem cell transplant 5 months ago, and it did provide me with some perspective and reassurance to see him today and discuss our struggles with getting moving.  I also am in touch with my floormates from the hospital, who underwent the procedure the same day that I did, so I have a sense of where I should be and where I could be.

I'm glad that I have the energy to try and get going.  I know I will have continued ups and downs, but the little victories are continuing to add up!  I got to see Luke play in a tennis tournament this weekend (runner-up, as well!) and Jake also won a couple of matches (to be continued next weekend).  I watched Steve ride and have hopes that one of my 5 minute workouts this week will be on horseback.

It's been gorgeous in San Diego, and I'm just chomping on the bit to get back into the swing of things!  Thanks for all of your notes and words of support.

Tuesday, October 5, 2010

Small Victories

Well, I had some rough times since my last blog, but I am celebrating my small victories today.  Some, you will note, are grander than others... but I will let you be the judge!

Today's victory: I ate a normal lunch and dinner!  My nausea is vastly improved, I have not thrown up in days, and my energy level is better.  My gut, however, is still not a happy camper.  I also finally returned some shoes I ordered online that didn't fit.  They had been eyeing me from my entry way bench for 3 weeks... but I just didn't have the energy to get it done.  And today it was easy as pie.

Yesterday's victory: When I did the breakfast dishes I noticed that the boys had eaten cereal for breakfast without milk.  I opened the refrigerator and--it's true--we were out.  And they never said a word.  That's not the victory, don't worry.  The victory was that I went grocery shopping and got some fresh foods and cooked a couple of meals!  But it touched me that the boys have become so accustomed to or sensitive to my difficulties over just these few weeks I've been home that they are trying to just make do.  It was a Scarlett O'Hara moment for me for sure... I will try to do a better job keeping food in the house.

Weekend victories: Jake had a huge battle for the West Coast Tennis Academy Boys 12s championship match.  Lost the first set 4-6 with impeccable sportsmanship (for those who know Jake, that is no small victory).  Won the second set 7-5 after getting down 3-5.  But lost the third set tiebreaker.  For me, seeing Jake play so well and handle himself so well was an immense source of joy and energy, and possibly the reason my next two days went better!
Then, Steve racked up the ribbons at his horseshow.  I miss Atlas, miss riding, but snuck down to a non-stable area where I could safely watch the show and minimize exposures.  It was great to see my friends, and pet my horse (Champion Green Rider, 2nds in all the Low AA Hunters).

Those are the main areas of celebration at present, but there is so much to celebrate in our lives and our friendships.  Just the fact that you care enough to read this, and send me email reminders if I fall behind is cause for celebration. Prior to the weekend, I didn't get out of bed or leave the house much, so if I haven't returned a message or call please forgive me.  I was very sick with that colitis.

Will have more good news soon, I hope!  :)

Sunday, September 26, 2010

"Difficile" Times

Round two of pneumonia has been treated with mixed success.  I am thrilled to report that my breathing is much improved!  However, the extended broad spectrum antibiotics have unfortunately caused a super-infection... commonly known as C. Diff.  This nasty, nasty infection has left me about as miserable as I can be.  I am suffering with severe cramping abdominal pain.  My amazing and wonderful doctor actually had to make a house call today to examine me and bring me some medication for the pain.  On a Sunday!  Of course, I am now on another antibiotic to fight this infection, as well.

Without my primary doctor, I don't know where I'd be.  But for now, I am laying low and trying to heal.

Tuesday, September 14, 2010

Once is Never Enough

I had a funny moment today.  At about 6 pm, at the end of a very long day of always urgent medical treatments, I spotted my fabulous rheumatologist in the hallway as I received my IV antibiotics.

She had emailed me last week with a lab value which was quite elevated.  I was apparently sick of being sick.  I emailed her back and basically said, "Let's pretend we never ordered it."  She said she just didn't know how to respond... but she knew she would be seeing me this week and we'd figure it out.  Oh--and I didn't have an appointment.  She just knew I'd be back.

And I was.  My testing today showed that my pneumonia and pleural effusion (the fluid collection in my lung) have recurred.  The symptoms are exactly the same as those I felt in the hospital, but while the volume was 11 (for those Spinal Tap fans) in Chicago, the volume is down at about 4 now.

So, with great haste another PICC line was placed today and my IV antibiotics restarted, as well as new oral antibiotics and some other medication adjustments.  This, too, will pass.  Just like those refried beans.  :)

Monday, September 13, 2010

I'm Famous!

When I started my career as a physician, I admit I did not think that my first major publication would be as one of the 125 white women in a study.  But, there you have it.

I have enrolled in several scleroderma research studies these past 3 years, although only one (ASSIST, in Chicago) has involved treatment.  The others just want to study me--draw labs, look at my test results, have me complete forms on all sorts of unusual and somewhat personal questions!  But, it is worth it in the name of science.

The first of these studies has been published, and I will attach a link to a summary of their findings at the end of this post.  For those who are curious, I do carry the ATA-1 antibody (also known as Scl-70), which turned out to be the only indicator of early and aggressive lung disease.

As for me, well, I'm sitting at home, taking calls from my agent and having bon bons dropped gently onto my tongue.  I really should have one of my people take a look at my toenails... atrocious!  I can't bend over to paint them without feeling sick still.  I had a rough weekend but I know that I will be feeling better soon.  Check out the link below!

http://7thspace.com/headlines/355983/predictors_of_interstitial_lung_disease_in_early_systemic_sclerosis_a_prospective_longitudinal_study_of_the_genisos_cohort.html

Wednesday, September 8, 2010

Good News!

Was that really me just a couple of months ago??  Thought I'd share a photo from our summer vacation before I share the good news...  nothing like a little sense of anticipation.  :)

I drove up to UCLA today to see my specialist in scleroderma, Dr. Furst.  He reviewed all of the data collected in Chicago and gave me a thorough examination.  First, he feels that my skin has already relaxed somewhat, which he believes indicates that I will have a good result from the transplant.  Second, he feels that the abnormal cardiac catheterizations results indicate cardiac involvement with scleroderma, rather than PAH.  While this is not exactly great news, it is better news than PAH.

He has advised a more aggressive medication regimen to help solve the ongoing upchuck issue--wish I had Karen's silver tongue, but you can check comments from my last post if you need a chuckle... no pun intended!

And, I didn't throw up all day!  I almost hate to write that, 'cause I don't want to ruin it, but there it is.  :)  Progress!

Friday, September 3, 2010

Wake Me Up When September Ends

So... I was reading the paper this week (one of my more active pursuits over the last few days, I'm afraid), and I noticed that Green Day was playing Thursday night here in San Diego!

Steve has loved Green Day since our college days, and Jake and Steve jam to Green Day Rock Band on the Wii with style.  While the language may not be perfect, I admit, Jake loves the beat and the songs and Green Day has become his favorite band.  So, I bought the boys tickets and off they went last night.

Their encore song, "Wake Me Up When September Ends," so embodies my current life philosophy that I couldn't help sharing.

I'm still throwing up every day, and struggling to eat.  If only I were "one stomach flu away from my ideal body weight" like the gal in "The Devil Wears Prada."  Instead, I'd have to suffer for months.  Not worth it!  I need to get better and get active!  So, with the help of my local and Chicago doctor teams, we are tweaking my meds and trying to find a solution.  I've pulled the muscles in my back from vomiting so much for so long.

Otherwise, I am doing fine.  I think my lungs are slowly clearing but I haven't tested my stamina as yet.  I have heard from my 2 friends who went through the transplant with me, and while one is doing well (just tired in the afternoons), the other is also suffering some complications now, although different from mine.  I think this process is just tough on the body and patience is needed.  The tincture of time will surely fix these minor issues.

Wake me up when September ends.  :)

Sunday, August 29, 2010

Home, Sweet Home (Again!)


It's good to be home!  Here I am again, back home in beautiful San Diego.  The weather has been fantastic, I'm sleeping in my own bed, and spending my time with my family.  The kids had a great summer with Grandma and Grandpa, but I do know they missed me and Steve, so it's wonderful to be home with them again.  

I'm feeling fairly well... still a fair bit of chest discomfort from the pleurisy, and plenty of nausea and vomiting from the chemo and IV antibiotics.  But, I am able to get up and around and do some slow walks with the dogs (and Steve, the poop master), play some cards with the kids, and even cook some easy meals.  It's all progress, and that's all good.

As far as the study goes, I don't need to return to Chicago for 6 months, so I will get some time to heal and relax here at home.

Or maybe not... for tomorrow begins the new school year.  4th grade for Luke, 7th grade for Jake, and all that entails.  Tennis every day after school, homework and projects, lots of running around... I will need to pace myself.  And, someday soon I hope that I will be able to return to my horseback riding and maybe even tennis again.  One can always dream!

I'm off and slowly walking, and will keep you informed of the progress.  :)

Tuesday, August 24, 2010

Forever Young





Well, I got my new birthday:  August 10, 2010.  I'm not sure if that makes me forever young, but I'm going with it!  I'm certainly feeling better each day, so hopefully that's kind of a Benjamin Button type of thing!  :)


I made it back to my apartment from the hospital and I am receiving outpatient treatment today and tomorrow.  I will be able to fly home to San Diego on Wednesday night, and continue care with my wonderful doctors at Scripps starting on Thursday.


I am so excited to see my family and friends, so excited to be on the road to recovery, and so grateful to everyone who has supported me through this process.


These first 100 days are critical in avoiding infections, but after that I will slowly be able to return to the activities that I love and life should just get back to normal.


Love you all!  


May God Bless and keep you always
May your wishes all come true
May you always do for others
And let others do for you
May you build a ladder to the stars
And climb on every rung
May you stay, forever young


-Bob Dylan

Sunday, August 22, 2010

Meet Sherlyn Delaney Roberts

I have been contacted by and supported by so many people during this process.  One of them is Sherlyn, a scleroderma patient who underwent stem cell transplant in 2004.

I found her story amazing and inspiring, but I also felt that she described the experience of scleroderma and the stem cell process in a way that really resonated with me, and with writing far better than my own.  If you have the time, please click the link and read her story, which was published in the Scleroderma Voice in 2007.  While her complications during transplant were certainly more dramatic than mine, it is so encouraging to read in the story and hear from Sherlyn herself about how well she is doing all these years later!

I am also slowly improving and hope to be discharged to my apartment tomorrow!

http://www.scleroderma.org/pdf/News/2007/sherlyn-story.pdf

Saturday, August 21, 2010

Engraftment!

Houston, we have lift off!

My white blood cell count this morning is 0.6.  My stem cells have found their way to the bone marrow and have begun to produce cells, cells which are naive to the idea that anything is the enemy, let alone that collagen is the enemy.  So, I am relieved, excited, and feeling much better!

Dr. Burt reminded me this morning that it is the beginning of a long recovery.  He said I will feel better in 6 months, better in a year, and see full results in 2 years.  I don't know exactly how far this will take me to a full recovery, but I am so eager to get there!

Your love, posts, support, texts, calls, emails, and prayers have meant the world to me.  Thank you!

Thursday, August 19, 2010

Still Waiting

Ah, sigh.

Still waiting for those little stem cells to take hold.  But, I think it's going to be soon--maybe even tomorrow.  :)

While I still have the pneumonia and fluid in my lungs, I am overall feeling a bit better day by day.  I am getting 2 red blood cell transfusions with a little extra kick of diuretic to help me feel stronger today, along with a transfusion of platelets.  Otherwise, it's much of the same, with waxing and waning strength, energy, and breathlessness.

As my Dad would say, "Patience and optimism."

Tuesday, August 17, 2010

Give Blood!

Just a quick thank you to everyone who gives blood.  Your generosity saves the lives of so many people every day.

I may have lost track of how many blood transfusions I've received here, but I did have another round of red blood cells and another round of platelets today.

Harken back, if you will, to the days of yore... the days of mobilization.  Yes, it was only a few weeks ago.  :) During the mobilization process, I was given a cocktail of chemotherapy and bone marrow stimulation which urged my body to release the adult, blood-producing stem cells from the bone marrow.  I proudly collected 5.2 million of these beauties during harvest.

When I was admitted this time for the transplant, my cocktail was a little different.  I was given chemotherapy meant to both obliterate the bone marrow and another one to surgically excise all circulating white blood cells.  It was important to try to completely remove any lingering immune system (white blood cell) messages which wrongly identify normal tissue as the enemy.  After that 5 day vomit fest, I mean treatment, I received my 5.2 million beauties back in a simple blood transfusion-like procedure.

For a few days, I still had enough circulating red blood cells and platelets to get by.  But, as my bone marrow remains fallow while the little stemmies find nice homes, my counts drop and drop.  I have become dependent on blood transfusions until the bone marrow begins to function again.

When the stem cells find a comfortable spot, they will begin to produce all three cell lines: white blood cells, red blood cells, and platelets.  In the meantime, I give a sincere thank you to the donor every time I watch their blood save my life.

In other news, I am officially septic.  My blood cultures are positive for bacteria, which I guess explains my continued daily fevers and so forth.  I now have a team of infectious diseases specialists on board who are further caressing my antibiotic regime.  I do feel a bit better, ate a little today, did a little walking, and continue to improve.

My stem cells could take hold any day now, so I look forward to sharing the good news soon!

Monday, August 16, 2010

Coming Around the Mountain

Hi, gang,

Sorry I coudn't post these past couple of days... my fever was so high that the computer seemed unbearable and blurry.  But Steve passed along your messages of support and kept me going.

My temp is down today, although still not normal.  It was just 101.4 at the last check.  Still on those antibiotics, getting medication for my pain, and had another red blood cell and another platelet transfusion.  Sometimes I think I need all of these transfusions because of all the blood draws!  Had to pause there for another set of blood cultures.

I am going to start a little science discussion on stem cell transplants for autoimmune disease.  It is probably too big a topic to post on one blog, so I may try to do a little follow-up day by day.  Remember, too, that I'm not an expert.  But, several people have asked for a little more information about what this is about, and why I am in Chicago for it... and those questions I will try to answer here.

http://www.allmystemcells.com/YJAUT_1067_1.pdf

I have placed a link here to an article which really helped solidify my decision to visit Dr. Burt in Chicago and pursue a stem cell transplant.  It is called, "Hematopoetic Stem Cell Transplantations for Autoimmune Diseases: What have we learned?"  Dr. Burt is the primary author, and certainly the opinions in the paper reflect his views.  I also see an outstanding expert at UCLA who has a differing point of view with respect to some of the details.  His stem cell transplant trial, the SCOT trial, is nationally enrolling and highly respected.  So, first let me say that this area is not without its controversy.  I do not purport to know the answers.  I am merely going to work on summarizing this paper (quite a bit!) and putting it into terms that are a little more accessible.

Stem cell transplants have been performed on cancer patients for the last several decades.  I am getting a similar but different type of transplant--but an autologous (from my own cells), non-myeloablative (bone marrow would be able to recover function in theory), adult stem cell transplant.  The theory is to "reboot" the immune system.  It has learned, probably from an as yet unknown environmental exposure, that healthy internal tissues should be attacked.  A new immune system will theoretically not go after these healthy tissues... if I can just avoid "the thing."

Initially, animal studies were done which showed that autoimmune diseases could be put into remission through this type of treatment.  Unfortunately, even with the more aggressive myeloablative regimen, the one used for cancers in which the bone marrow is permanently destroyed, autoantibodies developed once again in some subjects.  So, second point: this is an experiment, and not necessarily a cure.  The goal, rather, is to change the natural course of the disease.  Because I was experiencing fairly rapid decline in multiple organ systems, I was a great candidate for transplant.

Why?  Well, first, let's hit on controversy #1 again.  Using such an aggressive treatment for autoimmune diseases is considered by some to be too risky.  Many people survive years or decades with scleroderma and have no life-threatening complications.  These people should clearly not undergo a potentially life-threatening procedure.   One way to do so is to look for recently diagnosed patients with rapid onset of diffuse skin disease or rapid development of internal complications.  This population tends to have a much worse prognosis, so these people may think it is worth the risk of such a drastic procedure to change the course of their disease--slow it way down or even stop it.

In addition, I think that everything should be done to minimize risk to the patient and reduce life-threatening complications.  Others would perhaps rather shoot for the moon than risk a huge, if safer, procedure, only to see their disease come back.

Next, the ideal candidate would be early in the course of their disease.  While the very first safety studies were done on patients who were clearly in dire straights, most researchers now are actively looking for patients within the first few years of diagnosis.  This is not just because we know they have the worst prognosis if they are already really sick, but also because the transplant is most effective in the early, inflammatory stage.  Nothing can really reverse scarring.  So, the disease you have you mostly keep, but the disease you were going to get you may be able to stave off.

Now, my last point for tonight.  There are several types of stem cells transplants, and each differs in its goal, success rate, and danger.  Not every type is appropriate for every disease for a variety of reasons.  I have chosen what I think is the least dangerous type of stem cell transplant: adult, autologous, non-myeloablative.  Other options are out there, and many people think that the myeloablative regimen, which contains total body irradiation, may be more effective.  As I mentioned, in scleroderma these two methods are currently being compared, and I am part of it.  I chose Chicago for this regimen.  For me, it was the right choice but I know many other patients and researchers feel differently.

Let's keep funding research so we can get to the answers!



Sunday, August 15, 2010

The Daily Show

Steve here again.  The computer screen is not Holly's friend right now, so I'm the blogger-in-absentia.

Holly still has a fever and pain in her chest, which led to another very rough night without sleep.  A CT scan showed she has pneumonia & pleuresy, so her doctors put her on very aggressive antibiotics along with pain medication.  Also, her red blood cell & platelet counts were very low again, so she received more transfusions.

With all these meds, Holly managed to rest off-and-on during the day, and she even walked a few laps around the hospital floor this evening.  Her fever persists, but she's optimistic she's on the upswing.

All the meds have also given Holly a constant bitter taste in her mouth.  Foruntately, chocolate ice cream sounded good to her, so I ran to the local grocery store and picked up a pint for her (and one for me, too :-)...

Saturday, August 14, 2010

Minor setback

Steve here blogging for Holly.  Unfortunately, Holly has had a tough day (and night) with high fevers and pain.  Her doctors have started her on some new antibiotics, and they're running tests to determine the cause.  We're hopeful that tomorrow will see the fever drop and the pain subside.

Keep sending those positive vibes - Holly really appreciates it!

Friday, August 13, 2010

The Waiting Game

A quick post tonight... things are improving in the GI department.  My counts are still "too low to count," and I did receive a platelet transfusion today.  Come on, little stemmers, take hold!

I am much inspired by Dr. Mike's suggestion (everyone else can groan here) to post some information about the science behind all of this, and that is my goal for tomorrow.

In the meantime, I sit quietly most of the time with Steve while he works, and I meditate and try to relax my sorry little gut.  It is slowly working, and I look forward to continued encouraging posts!

Wednesday, August 11, 2010

Rock On, Stem Cells!

Day 1: My white blood cell count is 0.1, or too low to count... that's what the lab says.  That's good news for today, but now I need those stem cells to take hold.  Over the next 7-10 days they need to find their way into my bone marrow and begin to produce my new immune system... the one that thinks collagen and blood vessels are just fine!  :)

My red blood cell count came up to 9 with my blood transfusion, and my platelet count is a low but still safe 47.  So, no transfusions today.

For the rest, it's much of the same.  My GI tract is unhappy, and the vomiting and diarrhea persist.  I feel so sleep deprived after a week here, that I'm not always sure which side of sane I'm on.  But, I'm rolling along and day by day I'm going to get stronger.

Thank you to everyone who posted and emailed and texted me to lift my spirits, and to those who are praying or just thinking now and again.  Your support is incredibly meaningful to me.

Steve will be back here in Chicago tomorrow night, but I'm glad he and the boys have a little chance to reconnect tonight.  Love to you all!

Tuesday, August 10, 2010

A Brand New Day

We call it Day 0.  The stem cell transplant has taken place!

Come on, stem cells (Michelle, I'm using my Scottish accent there)!

I have had a very difficult couple of days.  I don't recall ever promising to be strong or stoic, which is a good thing, 'cause I'd be a liar.  I've been emotional, sick, and pretty miserable.  But, I have some really good news, too.

Dr. Burt was concerned about my heart making it through these past 5-6 days, but my heart did great.  So, he feels strongly that we are through the danger zone.  It's really the best news I could get.

I'm not, however, through the "misery zone."  Diarrhea, vomiting, weakness, and malaise have taken over.  I'm getting a blood transfusion now.  My white blood cell count was 0.3 today, and my hemoglobin was 8.  All the drugs and antibiotics and antivirals and antifungals have--along with my neutropenia (no immune system)--put my gut way out of order.  It's very unpleasant.  I know I have to just get through, but do I really have to do it with poise and grace?  Let's hope not.  :)  (It's really hard to vomit gracefully--trust me.)

Steve left tonight for a business meeting in San Diego tomorrow.  I will miss him but I'm glad he can kiss the boys for me.  I miss them very much, and miss my family and friends, too.  Thanks to all of you for keeping me going.  When my strength is depleted, I'm leaning on you.

Sunday, August 8, 2010

Good-bye Cytoxan

Just finished my last dose of Cytoxan, and I don't think I will be missing it!  I still have 2 more doses, including tonight's, of rATG.

I had a much better day.  No more fevers.  I am quite nauseated, but haven't vomited today... yet...

My blood pressure has been troublesome.  It was down as low as 70/30 earlier and spent all day in the 80/40 range.  Now, however, it has peaked at 100/64!  Progress.  To address this issue, my doctor has had to further reduce my medication for my heart and lungs, Tracleer.  But, this is a temporary issue and hopefully my blood pressure will recover when the Cytoxan is all through.

I am looking forward to tomorrow night, when the water torture (AKA continuous bladder irrigation) is set to end, too!

Saturday, August 7, 2010

Rough Day

It's been a bit of a rough day... fever to 102.5, chills, sweats and vomiting... all par for the course, I guess, with my treatments.

My blood sugar is a little better.  I think my pancreas decided to join the party!  My blood pressure remains pretty low, despite holding some of my medication.  Steve has been a trooper, sitting here most of the day and helping me through.

I'm on strong antibiotics and antivirals, but I think the fever is from the chemo, anyway.  Hoping for a better day tomorrow...

Friday, August 6, 2010

Happy Anniversary, Steve

It's our 16th anniversary today, and Steve and I did not celebrate in style.  We did, however, share a slow paced day at the hospital during which he held my IV pole and accoutrements while we took some laps around the 15th floor of Prentice.  He is an amazing, kind, loving and supportive husband, a great dad, and I am so lucky to have him in my life and here in Chicago to be my life partner and companion.

My body is doing fine with a few little twists and turns.  I am getting very high doses of steroids... 10 mg of decadron IV with chemo number 1 followed by 1000 mg of solumedrol IV with chemo number 2.  In addition, many of my medications are run into my body with dextrose, a sugar.  So, my blood sugar is a little high, a result of the steroids and IV fluids.  We will have to keep an eye on it, but so far it's a minor glitch and fairly common with this regimen.

Also, my blood pressure is very low.  84/39 at last check.  This is also likely from my medications, and I will discuss adjustments in the morning with my team.  They are trying to protect my heart, but I do need to be able to stand up, too!  :)

Otherwise, my numbers are great and I am feeling OK.  A little tired, a little unpleasantness, but so far so good.

Thanks to all for your continued notes of support!

Thursday, August 5, 2010

A New Beginning--Almost

I like change, she said, as long as I remember I like change.  --Brian Andreas


Back at Spa Prentice today.  I had a fun day getting to know more about my kids!  They play an internet game called Grepolis.  The game is tough... you build a city in ancient Greece and need to decide how to allocate your (at first) very limited resources.  Will you invest in your timber log operation, your silver mine, your quarry, or your Senate?  How many fields will you plant to feed your people and grow your city?


However, after a few days my beginners protection will end, so I will have to build up some troops to prevent invasion and destruction of my beautiful new city!  If you want to join Grepolis, email me or Jake.  It's fun, and a nice way to pass the hours here.


I'm pretty tired right now.  I was given some IV Ativan for the bladder catherterization (multiple ouchy attempts) and another dose for the chemo.  I will be given Benadryl in just a couple of minutes for the r-ATG, so I know I will sleep after that.  But, I wanted to just write a quick note to you all and say that I am doing fine.  My WBC (white cells) were 4.8 today, hemoglobin 10.4, platelets 227.  Absolute neutrophiles 3.8.  Great starting numbers, I guess.  I will probably need some platelet and red cell transfusions while I am here, though, because the destruction of my bone marrow has started.


It's a change.  I'm hoping this reboot will be a big change for the better.  The care here is exceptional, the staff is wonderful, the room is quite nice, and it's great to have Steve here with me most of the day.  I miss you all and, where ever you are, rest assured I wish I was there with you.  Thanks for all of your kind notes...you keep me going.


Oh, and did you notice I changed my web page, too?  Get ready for lots of changes to come!

Wednesday, August 4, 2010

I'm so PICCy (again)

So, I got my second PICC line in today.  The PICC line is a peripheral line with access to the central circulation; in other words, the line is accessed at my arm but the catheter extends to almost the heart.  This kind of line is great for my anticipated long hospitalization, because the nurses can run my medications through the line and also draw my blood tests from it.  It will save me a lot of sticks!  It was a bit of a trial to put it in today because the blood vessels in my right arm kept going into such spasm that the PA couldn't access the veins.  However, when he switched over to the left arm, things were smooth as silk.  I'm PICCy once again.  :)

The staff wanted to know why I needed another PICC line, since they can last a long time and I had one placed earlier this summer, and I admitted that I had my first one pulled for my trip to Europe... so I'm sharing a photo of the London Eye today because my wonderful family vacation is on my mind!

While I was in the recovery area, I found my friend K whom I met at the last hospitalization!  She is getting a stem cell transplant for an unusual form of Multiple Sclerosis.  It was nice to see a friendly face, and we will be each other's support during our mutual stays.  We have a lot in common--cute sons, supportive hubbies, autoimmune disease, and the exact same stem cell transplant schedule!

It's so nice to have Steve here with me, so thanks to everyone at home (especially my parents) who are keeping the home fires burning.  And the kids happy, and the dogs fed, and the cats pampered, and the horse exercised, and... I think you get the picture!

Saturday, July 31, 2010

Hair Yesterday, Gone Today?

Yeah, I guess I should have posted this one sooner.  That old "here today, gone tomorrow" thing.  Anyway, thought I'd share my first baldy photo.  I still have a little stubble on top from my trip to the kids' hair dresser today.  It's the cheapest place I could think of to do a little buzz work on top.

I just couldn't stand it any longer though.  I was waking up at night practically choking on handfuls of hair, and I was nearly bald anyway... just a funny, shaggy mohawk on top... so I took the plunge.

Heading back to Chicago on Tuesday for 5 days of ultra-high dose chemo, followed by the stem cell transplant... then we wait about 10 days and the stem cells will find their way into the bone marrow and begin to produce a new immune system for me.  I'm not looking forward to the month of August, but I am really looking forward to a lifetime with a fresh, new immune system.  :)

Friday, July 23, 2010

Cleared for Take Off

Great news!  My heart passed the secondary testing, including a right heart catheterization pre and post fluid bolus.  This helped the doctors establish that my heart should be able to cope with the stressors of the stem cell transplant.

I am cleared for the transplant!  We are full speed ahead!  And, I will be home tonight to kiss my babies.

Thanks to everyone for your messages of support.  They mean the world to me.

Thursday, July 22, 2010

Bleed Like Me


Success!

With much trepidation, Amy and I went to the hospital this morning.  There seemed to be an insurmountable number of hoops and lucky breaks we would need to complete harvest today.

A large catheter was placed in my internal jugular vein, and then my labs were drawn.  We had a tense 90 minutes waiting to see if my counts had increased enough to proceed with the stem cell harvest.

Yesterdays white blood cell count (WBC) of 1.0, which is way too low, had increased overnight to 5.9!  Another test, the CD34 test, confirmed that the harvest could proceed.  Whew!  One hurdle down.

I spent almost 4 hours on the machine which filters my blood and isolates the stem cells.  An estimate determined by my individual counts and goal (2 million cells) indicated that 15 liters of blood would need to be filtered to reach goal.  The harvest was stopped at that time, and we waited another 90 breathless minutes to see if we were successful.

For once, I outdid myself in the right spot!  I was able to pump out 5.2 million stem cells.

My catheter remains in place through tomorrow to help with threading the special tubing for my heart catheterization in the morning.  One more big hurdle to go...  and it looks very promising that I will be home tomorrow night.  It's hard to believe so many things fell into place today.  It was an exhausting, emotional, and successful day.

Wednesday, July 21, 2010

The Stems Will Come Out Tomorrow?

They say in Chicago, if you don't like the weather, just wait 5 minutes.

I admit I feel like I'm twisting in the wind right now, living in the old good news-bad news doctor joke.  Honestly, I don't know the truth (Maybe I can't handle the truth?), but I will put to blog this week's confusing twists and turns and perhaps somewhere find clarity.

First, I had my induction chemotherapy.  It seems as though I am an over-achiever.  I'm now officially neutropenic and locked away tonight until my procedures in the morning.

Next, I started a series of self-injected Neupogen shots last Saturday.  Sadly, I'm an under-achiever.  Apparently, I'm just not stimulating the bone marrow quite enough as yet.  So, there is some doubt as to whether tomorrow's planned harvest will be a go, or be delayed.  If it is delayed, it may also delay my return home for a visit with my kids.

I also had a visit with my cardiologist/ pulmonary hypertension specialist here in Chicago.  He expressed some doubt about the diagnosis of pulmonary arterial hypertension (Yeah!) but suggested an alternate possible diagnosis of scleroderma-related restrictive pericarditis (Boo!) based on his read of the cardiac catheterization results.  To provide clarity, another cardiac catheterization was ordered.... and should be done before I go home.

So, hoping all these pieces fall into place and that I can go home to my kids on Friday night as planned...

The photo above is my feeble and ultimately unsuccessful attempt to ride a Segway with my friend and doctor, Amy, on Monday.  Luckily, she was able to complete the tour today while I made my appointments.  She is here to help me through the harvest, and is much appreciated!

Friday, July 16, 2010

Little Hollywood

Chicago, Summer 2010
Transformers 3

The excitement here in my corner of Chicago is palpable.  Hearts are aflutter, and it's not just the 100 degree sweltering heat.  Michigan Avenue is shut down for the filming of Transformers 3.  I guess I'm lucky I don't have a car!

Honestly, I've spent most of the past several days in my apartment.  I have been out for a little while each day, but the heat and humidity are not easy with the nausea and fatigue which are part of the chemotherapy.  I prefer air conditioning right now.

I did sneak out and see Despicable Me--which I loved!  The kids told me it was hysterical and they were right.  It's kind of funny--here I am finally alone after years of kids' movies and that's the one I chose to go see!  And I'm planning some more movies, too...

That's how it goes in Little Hollywood!

Monday, July 12, 2010

Eating Humble Pie on a Soap Box?

Sitting in the waiting area for admissions this morning was a humbling experience.  Not because I don't feel that I am as ill or as needy as the other patients--I certainly feel that my condition warrants aggressive treatment.  What was humbling to me was to once again realize how lucky I am.

I met a patient with an autoimmune disease who is also here for a stem cell transplant.  She is in the early stages of kidney disease.  However, because my new friend is not currently disabled from her illness, she is still working.  She only gets a couple of weeks of sick leave per year.  So she will be here overnight for induction chemotherapy, go back to work Wednesday, return and plan to be in hospital for only 2 weeks for the stem cell transplant, and then go back to work.  ??  Without her job, she has no health insurance to cover the procedure... she cannot lose her job, but apparently there is no state short term disability in Illinois and federal family medical leave applies only to larger companies.  She will have to work during a stem cell transplant.  I honestly cannot see how it will be possible.

I met a young woman with another autoimmune disease, here with her husband and 9 year old son.  Like me, she has disabling symptoms and is on Medicare (this kicks in the US after 2 years of disabling disease).  However, her Medicare is primary and her husband's insurance is secondary because of the size of the company he works for.  And thank goodness for that!  Her husband's insurance has denied and denied care for her, despite horrific complications of her disease.  Luckily, she now qualifies for Medicare.

Steve's insurance remains primary to my Medicare because HP is such a large company.  How fortunate I am that my insurance company has approved my care.  But should good luck be a requirement for good health care?

As the conversation turned from health issues to food stamps, I realized yet again how very lucky I am.

If you fear health care reform because you think health care will be rationed, think again.  That reality is already here.  If you think it cannot affect you because you work and have good health insurance, think again.  The best thing is to stay healthy.  The stories above are the SUCCESS stories.  The people who are going on food stamps to get health care are the lucky ones.  For each person who is fighting these insurance issues to get health care, there are countless others without the resources or help to navigate this complicated system--or, have a really stubborn insurance company.

Don Berwick was recently appointed by President Obama during a recess, to avoid an anticipated filibuster of his nomination on the Senate floor.  The big topic these days: rationing of health care.  Right now, having private insurance does not mean that you will receive the treatment your doctor recommends, but the people who ration your care work in the health insurance industry.  Dr. Berwick thinks they should be in government, and that "we should ration with our eyes open."

Want to join the healthcare debate?

Oh, I'm doing well.  In the hospital, starting chemotherapy, enjoying a lovely afternoon and evening of bladder irrigation.  :(  I have a beautiful room at Spa Prentice, complete with room service and a flat screen TV.  If you've got to have chemo, this is the place to be.  The photo above shows my view, which happens to be of my apartment building with a peek of lake just behind...

Saturday, July 10, 2010

Taming the Black Beast

Le Bete Noire: the stuff of comics, myth and legend.  The Black Beast.

The late scleroderma researcher Dr. Carwile Leroy published an editorial in 1991 entitled "Pulmonary Hypertension: the bete noire of the diffuse connective tissue diseases."  He noted that while interstitial lung disease and renal crisis in scleroderma had some encouraging treatment options, pulmonary hypertension (PAH), "an especially destructive type of vascular involvement," remained unsolved.  PAH has emerged as the most severe complication and leading cause of death in scleroderma.

Treatment options have improved since this publication less than 20 years ago.  The primary change is bosentan, which is a well-tolerated oral agent used for PAH.

In my case, I have been on maximal dose of bosentan for over 2 years, so the rapidly rising pulmonary pressures cannot be improved through this medication.

My hope is that the stem cell transplant will stabilize the pulmonary pressures--along with the interstitial lung disease and worsening skin tightness--and allow me to continue a relatively active life.

I leave tomorrow morning for Chicago.   I will be admitted to the hospital early Monday for overnight chemotherapy, which is the first stage in the harvest process.  I will be on a new set of medications and get frequent lab draws over the next two weeks.  Late next week, probably on the 22nd of July, I will undergo stem cell harvest.

The goal: the only bete noire in my life will be a dark chocolate cake, flourless and rich... and my only problem with it will be the calories!  :)

Friday, June 18, 2010

Bad to the Bone

I spent the last couple of days meeting with my medical team here in San Diego.  I saw my wonderful pulmonologist, cardiologist, and rheumatologist, and spoke at length with my primary internist.

I like what my cardiologist said... he, like most of my doctors, didn't want to sway my decision.  But, as we discussed my options, he determined that I had a bad option and a worse option.  "The trick," he advised, "is to pick the bad option."

I'm here to tell you honey, that I'm bad to the bone.

I have decided to proceed with the stem cell transplant, off study and fully aware of the risks of a transplant with PAH (pulmonary arterial hypertension).  I'm pretty sure that's the bad option, and I embrace it with optimism.

Wednesday, June 16, 2010

There's no place like home...

So good to be home.  So grateful to my friends and family for taking care of the boys and keeping my spirits up.  So glad Jake's team made it to the Little League finals Friday so I can see them play!

Great job, boys!  Thanks for keeping the rally alive!

I appreciate all of your good wishes and comments.  Just a point of clarification... I haven't really been kicked to the curb!  The folks in Chicago are happy to help me, but I admit I felt forlorn when I learned that I no longer qualify to cross-over in the ASSIST trial.

Many options are on the table, and I will be meeting with my doctor here and talking with my family to decide on our course.

Oh, if I only had a brain!

Tuesday, June 15, 2010

I got the boot



Unfortunately, I got the boot.

My right heart is under strain, as revealed by the cardiac catheterization and the cardiac MRI.  This strain increases mortality with stem cell transplant.

I am no longer eligible for the stem cell transplant in the ASSIST trial.

Steve and I have some big decisions to make about how we plan to move forward.  Kristin and Dr. Burt are incredibly supportive and have given me options, but there is no good answer.

:(



Monday, June 14, 2010

A Little Uncertainty

Am I done with my pre-testing?

I'm not sure.

I unofficially finished the testing today with my upper endoscopy and (hell in a hand basket) esophageal manometry.  I truly hope I don't have to do THAT one again.  :)

And I may know tomorrow, when all my tests are analyzed, whether I am able to move forward... or repeat that dang heart catheterization... or clean out the apartment...

This cute park is just a few blocks from my apartment.  I have been able to see more of Chicago's charm with this visit... the weather was not as bad as it usually is when I visit!  :)  I like my apartment.  The building is great and location is perfect for my needs.  So, hopefully I will be back this summer to explore more of the city from my little nest.

Will let you know when I do!  Thanks for the notes and the love...

Friday, June 11, 2010

We've got Trouble


Right here in River City
Trouble with a capital T
That sounds like P
And stands for...


Pulmonary Hypertension.


I will have to await the results and full evaluation of the cardiac MRI and stress echo to see if we can proceed to transplant.


I was reading (and enjoying) my new #1 Ladies Detective Agency book, "The Double Comfort Safari Club," when I was called into the cath lab.  When I returned from the lab-crying, I'm afraid- I picked up my book and began to read again.  Our hero, Mma Ramotswe, was in church, listening to the sermon, when a woman in front of her in the pew began to cry.  And these were literally the words I read...


"Do not cry, Mma, she began to whisper, but changed her words even as she uttered them, and said quietly, Yes, you can cry, Mma.  We should not tell people not to weep-we do it because of our sympathy for them-but we should really tell them that their tears are justified and entirely right."


I've always felt so weak when I cry.  So I'm glad my friend Alexander McCall Smith let me off the hook today.  I'm feeling better, and my doctor hopes we will be able to proceed as planned... 

Thursday, June 10, 2010

Go Blackhawks!

Wild times in Chicago!

The Blackhawks won the Stanley Cup, and the town has gone wild!

This morning I had my dobutamine stress echo, and the nurse and echo tech confided in me that the doctor in charge of my test was a big Philadelphia fan.  Afraid to rib him (they needed to keep their jobs), they begged me to do it for them.

Clever as ever, I waited until he cleared my heart on the stress test before innocently asking, "So, Dr. B, are you looking forward to the parade tomorrow?"  He looked at me, looked at the staff, and their was a VERY brief moment of silence before the nurse and tech burst out laughing.  Dr. B immediately knew they had put me up to it, and fortunately proved to have a great sense of humor.  :)

The city streets were super busy today as the Cup made the rounds, and there is a huge parade scheduled for tomorrow.  I'm hoping my doctors and nurses show up for the cardiac cath.  :)

Wednesday, June 9, 2010

The Domino Effect

Check out cute Domino!  You will of course recognize big Atlas, my chestnut horse, ridden here by Kelly.  Kelly is leasing Atlas while I'm away in treatment, and her daughter is leasing adorable little Domino.  The horses are making friends, and I hope they're in for an awesome summer!

And the dominos are falling here in Chicago, as the barriers to my recovery are knocked down.

I had a CT enterography this morning.  Lots of icky contrast and a little glitch with the PICC line not withstanding, I survived the CT.

Next came my first meeting with the pulmonologist.  She was very thorough and interested.  She is concerned that the larger lung nodule could represent a fungal infection, despite the negative cultures.  Additional blood and urine studies will be done to check for fungal antibodies.  Dr. Burt, however, is confident that the nodule is related to scleroderma after hearing that the 8 week culture results are clear.  This is critical right now, as a fungal infection would keep me from the transplant.  If we proceed, I will receive anti-fungal therapy for 6 months as a precaution, as all of Dr. Burt's patients do.

Dr. Burt was, surprisingly, less concerned about my fungal exposures at the barn.  I will be able to visit Atlas, maybe with a mask, at least out of the barn.  I'm not sure exactly how it will turn out.  But, I'm encouraged!  And he suggested that I will be back to riding, perhaps sooner than perviously expected.

I met with a gastroenterologist and will have endoscopy and manometry on Monday.

I met with a new cardiologist, and had a MUCH better visit than last year.  My heart (and lung nodule) are the last two barriers to the transplant.  He felt quite optimistic that my stress echo and cardiac catheterization will be clear.

And, finally, I had my official pre-transplant visit with Dr. Burt.  My skin score has worsened once again, and my lung function remains substantially worse than at randomization last year.  He carefully reviewed all of the risks of transplant, but had trouble hiding his excitement over recently compiled results in this study.  Nothing is official, nothing is published, but I left the meeting with a great feeling that this is the right path for me.

Let the dominos fall... I'm ready to beat this thing!

Tuesday, June 8, 2010

Dog Days???

Oh, Chicago.  Where are my promised dog days?

Another rainy day here in Chicago.  And another day filled with medical testing!

I got my PICC line placed this morning.  This "peripherally inserted central catheter" allows me to avoid the hassle of daily IV pokes and blood draws.  Instead, I care for my line and the nurses at the hospital can access it each day.  It was a fairly easy procedure to have it inserted, and it's not too uncomfortable to have.

Next, my favorite nurse Kristin drew 18--count 'em 18--vials of blood from me!  That's when I appreciated my PICC line the most, I think!  Kristin is the best.  She does all of my appointments and keeps in constant communication with me.

Kristin suggested I think about getting a wig--so I'm putting that out there for input.  She said my insurance will probably pay, so I called them and in fact they will.  I will lose my hair in July, and she said I will have "Demi Moore in Ghost" length hair in about 6 months.  Comments?  Advice?

Next was my dental clearance and X-rays (all clear), and then my cardiac MRI.  I spent about 10 hours, from 6:30 am to 4:30 pm, doing all the appointments today.  I'm wiped out!  I came home--in the rain, of course--and crashed for 3 hours before Steve texted me awake!

The best part of my day?  The play-by-play texting of Jake's Tournament of Champions baseball game.  Congrats to the Dodgers, and to Jake on his two singles and two runs!

Monday, June 7, 2010

Chi-Town


Back in Chi-Town!  The trip wasn't easy... my cab broke down in a thunderstorm on the way to my apartment from the airport... but I made it.


I had a busy day of testing today.  My pulmonary function testing started the day.  My results were pretty stable from the last test, according to the tech.  :)  


I also had an EKG, high resolution Chest CT, sinus CT, and Chest X-ray today.  The day was pretty smooth at the hospital and clinic, the staff were wonderful, the other patients are friendly, and the facility here is really quite impressive.


My apartment is quite nice, as well.  I'm in the Streeterville part of town, which I really like!  The weather was perfect today... almost like San Diego.  :)  My apartment has lots of great amenities, one of which is a shopping cart in the lobby.  I can wheel it down to the grocery store, which means it's far easier for me to go shopping!  Never mind that I was dressed in my usual "layers" last night in the chilly rain, wheeling along with my shopping cart on the streets of the big city.


Send me an email and let me know how you're doing!  

Friday, May 28, 2010

Desperately Seeking Cures

Check out the Newsweek May 24 and 31 double issue.  The huge cover article, "Desperately Seeking Cures," was a fascinating read.  In summary, the way that we incentivize medical research is creating an enormous amount of knowledge, and very few clinically applicable treatments.

For the millions of who are suffering and dying from diseases which currently do not have effective treatment, this article should be a huge wake-up call.  While the NIH and other government programs value and fund scientific discovery, advancement of knowledge and careful basic research, early and sometimes very promising discoveries are left in fallow fields.  Huge financial barriers, patent and licensing issues, and a lack of scientific appreciation for the drudgery of early drug development seem to contribute to the difficulties of bringing very exciting advancements to bear true clinical fruit.

According to Newsweek, "Private foundations have veered away from the NIH model, requiring scientists to share data and do the nonsexy development work required after a discovery is made."  Given this, I would encourage everyone to find a private foundation involved in this kind of clincial funding which is looking to solve a problem you feel passionate about--be it malaria, childhood cancer, or scleroderma.  I believe that many of today's medical problems will be solved through this type of private giving.

OK, off the soap box.  :)

We had another horse show this past weekend, and more success... but I admit it was a bit bittersweet.  It feels so surreal to be ending May and heading into June, into summer, into Chicago.

I admit I feel frustrated: there is so much to be done, and I see the summer stretching out ahead with lost weeks or months.  I'm so grateful that the folks at Northwestern were so accommodating with the schedule, and yet the kids can't quite understand why I'm missing their upcoming field trips and other special events.

I've had a few sleepless nights sorting through my worries, which center more around all the STUFF I need to do and less around the looming medical events.  Kinda funny, life.  :)

Love you all and I continue to relish in the support you provide each and every day.  Updates will get a whole lot more frequent in the months ahead, so please stay tuned!

Wednesday, May 5, 2010

T minus 32?





Or is that Fahrenheit?

Well, I'm leaving for the start of my stem cell transplant escapades in 32 days.  June 6.  I'm starting to make some preparations... I bought a used exercise bike on Craig's List so that I can pedal away and watch some TV when I get home--you may recall I will be banned from the stable.  Although, honestly, I'm going to push for some visits with a mask on... I can't imagine being away from the stable completely for such a long time.

I'm trying to get summer camps together for the boys to keep them busy.  Jake is even signed up for a week away in Washington, D.C.!  He was invited to a leadership program and he is raring to go.  He is also hoping to spend a week as a ball boy at the Southern California Open tennis tournament.  Luke will spend that week in a swim, golf and tennis camp with his good friend, Jenny.  The boys will be busy, but I have to actually nail all these plans down and pay for it!  Wish me luck!

We are even going to squeeze a family vacation in between testing and harvesting.  I will be in Chicago June 6 for about 10 days for testing, zip home for Jake's graduation, and then we're off to Europe!  When we get home, I'm slated to go back to Chicago for 2 weeks of treatment and the stem cell harvesting procedure.  Then I'll be home for about 10 days, and finally be admitted to the hospital in August for the transplant itself.

I'm excited, anxious and a bit afraid.  It's going to be a really short month and then a really long year.

Sunday, April 11, 2010

Spring Break!


Gotta love Spring Break.  I had the kids home all week, and we had a great time!  We are adding a new feature to this week's blog... movie reviews!  Yes, I seem to have spent far too much time at the theater this week.

*** How To Train Your Dragon: a touching story about a young misfit boy living in the Viking world and trying to please his father.  Great animation.  Jake says, "It's a lot like Avatar."  While I agree that people were riding flying dragons in both films, I'm not sure I can fully agree with "Siskel" in this case.

** Diary of a Wimpy Kid: cute story about a sixth grader who's not quite ready for prime time, i.e. middle school.  Both kids approved, but both agreed the book was better.  My kids just love those books.

* Alvin and the Chipmunks, the Squeakquel.  It gets a star because it was on pay-per-view so I saved on movie tickets and snacks!  It's all good, baby.

But, most importantly, Spring Break brought me another kind of break.  I have had far less pain this week... week one on my new injectable arthritis medication.  I can hardly believe it could act this quickly, but I'll take the placebo effect, too.  :)

Happy Spring!