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!  :)