July 26th Chemo Update

Chemo Day one is behind us.  Yesterday was a marathon day in the clinic - arrived around 10:30 and left at 6.  Yikes!  Fortunately my friend Karen from North Andover was with me along with a surprise guest my long lost friend from work days Lisa.  They were hilarious and wonderful company.

The day stretched out for a number of reasons...wrong labs pulled, the Dr Avigan factor (he takes his time before I do anything big), the need for an EKG, some numbers they did not like causing them to redraw blood work 3 times.  In the end all good and we started the chemo which will go through Friday.

The goal of this chemo is to keep the leukemia in my blood at its new found we-never-thought-we-would-be-here-again state of 0%.  Once I get through the recovery of this round of chemo (typically a month) we'll revisit our treatment options.  This chemo called Dacogen is one I tolerate pretty well so hopefully won't have too many issues with loss of appetite and upset stomach.

Also continuing to feel a bit better each day and my vitals reflect a much stronger blood pressure and better heart rate.

Coming Up

• Should be a pretty straight forward week of chemo every day until Friday.
• Will get the chemo every day and will also get fluids as needed to help with hydration and blood products such as platelets and red blood as needed.
• With my multiple blood transfusions I am at risk of too much iron in my system.  This iron overload can damage parts of my body including the liver and the heart.  There are therapies to combat and the team is also weighing the need for any transfusion with this risk.
• Occasionally my electrolyte numbers and/or levels of one of my medications in my system will be 'off' (either too high or too low).  These have all been corrected with adjustments to my medications.
• With the multiple IVs and blood draws I get every week my team continues to look at a more permanent option for access for blood draws and infusions.  Many options are not available to me right now (such as a port or central line) because they are too invasive and offer a nice place for my bacteria to colonize and turn into an infection (that's happened before with my weakened immune system).  One compromise option is a midline which allows access but is less invasive.  Probably more than you ever needed to know...

 Back to the clinic shortly

Thanks for checking in!

Love Maureen

Weekend Update July 22

Happy Birthday Johnnie Redmond!!

Family Fun  Emma wraps up rowing today (weather cooperating with no lighting) and leaves for a two week YMCA overnight camp tomorrow.  She went last year and had an absolute blast.  Some of her close buds are going and she is also looking forward to meeting people who come from all over the world.  Joe continues to work 6 days a week but is still able to sneak in some beach time and lots of friend time.  Along with Jim the kids and I have had a blast watching and tearing apart Americas Got Talent (not to mention the Republican National Convention :)

Health Update The last few months have been particularly challenging.  But as I constantly remind myself every day is a gift.  Here is a quick synopsis...

Disease Status  My leukemia recurred again a couple months ago. Since then I've been really struggling.  Two months ago the % of leukemia in my white blood cells was as high as 70%.  Yesterday's labs revealed there is currently no leukemia in my blood.  Now this lack of leukemia in my blood stream is a moment in time and could change at any time.  However for me to have 0% leukemia in my blood is nothing short of a miracle.  

Infections/Bacteria.  Over the last couple months I've had two pretty bad infections that required hospitalization. Fortunately the infections have been successfully treated with antibiotics and at this point are no longer active. If the infections come back I could be in big trouble.  Every couple of days cultures are taken of my blood to see if the bacteria grows into an infection in a petri dish - since starting the antibiotics the bacteria has not grown back into infections.   

Physical Strength  Currently my heart is not functioning at full tilt (due to the chemo), I am dehydrated and weak from deconditioning.  My heart races when I stand/walk resulting in my being able to walk short distances around the hospital or home (wherever I happen to be).  I am only going to the clinic in terms of outings and using a wheelchair to get around.  Fortunately I am literally getting better every day - for example today I am walking about double the distance as yesterday without needing to sit down. Also my  appetite is much improved

Prognosis and Next Steps:  I will most likely be getting chemo again next week to try and keep the leukemia out of my bloodstream.  Once we see how I am doing we will determine if I continue to get chemo every 6 weeks or so, enter a clinical trial, look at another transplant or something else.  All of these treatment options have pros/cons and, at Dr Avigan's suggestion, we are waiting until after the chemo treatment to see what our best course of treatment is and have a deeper discussion of the pros and cons of each option.  

One day at a time and today/yesterday is a very good day!

Thanks for checking in

Love Maureen

July 20

So sorry for the delay in posting.  Basically been in the hospital more than out these last 6 weeks.  Very weak right now and trying to get back to some degree of strength - even walking around the house wipes me out and I am currently using a wheelchair for clinic visits

God bless all of you who continue to take me to the clinic, bring me meals, send your prayers and love and continue to think of me.

We are hoping for continued improvement and for some more options in the treatment of this GD persistant leukemia

Love
Maureen