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


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!  :)