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.  :)

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

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

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!

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."

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!

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!

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 :-)...

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!

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!

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!

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.

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!

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...

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!

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!

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!