Weekend Update 8/22

Hard to believe it has been so long since my last post!  The summer has been wonderful.  We've been to the beach, out on the boat, and spent a fair amount of time shopping and preparing for 'back to school and off to college'.  We had several of our Ohio cousins here for a week which was amazingly fun.  They went tubing, toured Boston, spent some time in York at the beach/arcade/Golden Rod candy shop and a day in Westport with my cousin Joe, Aunt Debbie and Joe's kids.  The day and the sea cooperated and we had a beautiful time with the kids body surfing and the adults sitting under umbrellas - now that is a beach day.

Over the summer my visits to the clinic have been pretty regular and uneventful - until last week.  My white counts and platelets were dropping slightly which was not a definative cause for concern.  At the time I had a slight cold which could cause the drop.  However they decided to do a Bone Marrow Biopsy to make sure the leukemia had not come back and sadly we have found that it has.  This is pretty new news and Jim and I will go in Monday to learn the game plan.  Basically it will be some form of boosting my donor stem cells and attacking the leukemia with chemo.  In a way they overlap because boosting my donor cells should give more power within my own body to attack the leukemia.

Here is a little more detail from a non-medical person still in a bit of shock and maybe not fully translating what the doctor said

• The leukemia is in my marrow but not yet in my blood stream.  This could change quickly as AML typically presents and develops rapidly.  
• There is a possibility the leukemia will not 'explode' in terms of growth as my donor immune system has been fighting it's progression.
• From the beginning I've known I have a particularly aggressive form of leukemia and the fact that it has come back so soon after the transplant bears this out,
• The transplant engraphment is a gradual process.  Right now I am 50% donor cells 50% me.  At one point the donor cells were higher and my doctor is thinking the leukemia may be the cause of reducing that percentage of donor cells.  Of the 50% that is me, about 20% are leukemia cells.
• When I went into the hospital in December of last year my marrow was 100% leukemia cells crowding out everything else,  I am at a much better starting point compared to that.

The goal is getting me back to remission which is realistic and the treatment outlined has a history of success with other patients.  I should know more Monday re: treatment plan and maybe disease progression.

In the meantime I still feel good - decent energy and appetite etc. - for which I am very grateful.

The kids know and are doing okay.  Joe is off to school on Tuesday and as of now I'll be able to take him with Jim which is awesome.

That's it for now - keep praying my good and wonderful friends.  Thanks for checking in

Love, Maureen

Happy 4th and Happy 100 days!!

We had a wonderful weekend celebrating 23 years of marriage (Jim and I tied the knot on July 4th 23 years ago), our nations independence AND my 100 days post transplant!   In specific terms, I am able to get back to a more normal diet (I've been fairly restricted and never thought I would miss salads this much) and can get out a bit more without the Haz Mat getup of mask and gloves (though I will still wear in crowded places or the hospital).  I've also begun tapering off the immune suppressant medications.  My feet and ankles get pretty swollen and 'tingly' - going down on the medications may help alleviate these symptoms.  Also there are complications that are most likely to happen in the first 100 days - getting this far without major complications/setbacks is a huge gift.

Next up for me is getting my central line removed.  This line is used for medications, fluids and blood draws.  The only medication I am on via the line at this point is magnesium.  If I can tolerate the magnesium as a pill (apparently this can be hard on the gut for some) then I will likely get the line removed in the near future.  I've been incredibly fortunate the line has not become infected or been problematic in any way.

Hope you all had an incredible and relaxing 4th of July weekend.

Thanks for checking in!

Love,

Maureen

Weekend Update (long overdue!!) Sat/Sun June 27/28

I cannot believe my last post was Memorial Day!  Life has settled into a comfortable routine. Overall I am incredibly blessed to be feeling so good.  My stamina is returning, my color is good, and my weight is up (weird that I would ever say that was a good thing but 4+ months in the hospital, my diet restrictions and the long lingering after affects of the chemo took their toll on my appetite!).  The remaining after effects from the treatment (fatigue, some lingering stomach gymnastics, neuropothy (tingling) in my legs and feet swelling to egg plant size some evenings) are not alarming to my medical team and most likely tied to the medication (still on about 7 meds tied to the leukemia recovery + 3 vitamins) .  The stomach troubles could be mild graft vs. host which can be quite nasty but all my lab work shows my organs are in great shape and my blood work and post-transplant biopsy show no signs of the leukemia's return.  Go new immune system!!

In the past month we had some major milestones - much of them tied to Joseph's senior year.  Joe went to prom with his best friend Megan.  Megan's Mom Karen and I hosted the kids for pictures ar Karen's house - about an hour before the kids were to arrive and just as I was putting a dip in the oven, the power went out.  Thankfully all the girls had finished their makeup and updos - can you imagine??  Graduation followed that Friday and the ceremony was absolutely beautiful (see Joseph and Emma in the photo).  The skies cooperated for the outdoor event and it was a wonderful send off to a great High School career for Joseph.

Emma's school year lingered on until last week but she has managed to cram a lot of living into the week she had between school and her overnight camp.  She had an end of year pool party, a trip to Canobie (local amusement park) plus a couple days in Boston - one day spent on the freedom trail.  We've tried to do the Freedom Trail numerous times but always seem to end up at either Starbucks or Pizzeria Regina (neither of which were visited by the founding fathers).  Her girl scout troop was not so easily distracted and managed to stick with the program.  This morning we dropped Emma off for a two week camp in an Island off Lake Winipisauke in New Hampshire.  She barely remembered to say goodbye which bodes well for how excited she is for camp.

I still visit the clinic frequently for monitoring but have been able to participate in some of the above life moments.   It doesn't take much to tire me out and I am trying to be respectful of my body and minds need for rest as part of the recovery process.  Jim and I were talking last night about how far I've come given the scary starting point with all of this - once again, Thanks to God, all of you, my medical team and amazing family.

The next big milestone is 'day 100' - this is 100 days post transplant - during these first 100 days my risk of complications related to the transplant are at their highest.  In addition most infections happen during the first 100 days when my immune system is at its weakest.  Getting through these 100 days with no serious complications (well there was the fluid in the lungs that sent me to the emergency room but that was treated in short order and my Mom was here to help me through it) and no serious infections is huge.  The official 100th day is July 2nd.

After that I will continue to go into the clinic for monitoring as we need to stay vigilant should longer term complications arise (such as chronic graft vs. host).  There is no magical day when I am considered 'cured' but I sure am doing damn well.  Will keep you posted and will try and be more consistent with the posts!

Thanks for checking in...

With Love
Maureen

Monday May 25. memorial day

Happy Monday.  Life continues to smile on me this past week and weekend. My Mom was here helping with the transition home, getting me to clinic appointments, and helping Jim around the house. We were able to get to several of the kid's events as well (track and volleyball).  Thanks again Mom!

This weekend has been awesome despite my being at the clinic all three mornings. Emma joined me on Saturday and we went to a family party that evening (thanks Diane and John!!). I did not last too long but long enough to see some great friends who did not care one whit they were chatting with a masked and gloved Maureen (these precautions will last until the post-transplant 100 day Mark).

Good friends of ours (Jim and Denise and their two amazing daughters) brought dinner to us on Sunday for a fun little BBQ.  It has been beautiful here and a wonderful weekend.

On the medical side I continue to do well post transplant. At the clinic visits I give multiple vials of blood and my medical team uses these to monitor platelet count, white and red blood cell counts,  tacrolimus/sirolimus levels and the health of my kidney and liver.

I continue to take two immunosuppressive drugs tacrolimus and sirolimus to prevent or lessen Graft vs. Host disease.  At least twice a week I have blood tests to measure the concentration of both in my blood.   For reasons I won’t pretend to understand, the concentration can vary widely from week to week in the early weeks following the transplant.  A concentration that is higher than the established therapeutic range may increase the risk of associated toxicity, including damage to the kidneys, liver and nerves. A concentration that is too low may lead to Graft vs. Host disease (GVHD develops when the donor's immune cells mistakenly attack the patient's normal cells).  Sounds  a little scary but as long as my team is measuring the concentration of these drugs in my blood I am fine – as needed they simply adjust the amount of the drug (think more pills or less pills) to keep me in the therapeutic range.

The multiple clinic visits this weekend were primarily aimed at getting me back into the therapeutic range for the immunosuppressive drug concentration in my blood.  It is quite normal for the concentrations to vary in and out of the therapeutic range and my team always gets me back on track very quickly.  All other indications (lung, kidney, liver, blood counts) are just where they are supposed to be!

Off to read my novel and enjoy a quiet house.  Thank so much for checking in!

Love Maureen

Tuesday May 12

Last Thursday I returned home to North Andover in time for Emma's National Junior Honors Society ceremony, her volleyball game, Joseph's track meet and Mother's Day.  Thanks again to my cousins for their hospitality as I stayed with them in their beautiful Brookline home close to the hospital until  the  Doctor's were ready to set me lose on the North Shore/Merrimack Valley.  My Aunt Debbie escorted me back and forth to the hospital while  I was in Boston.  Now that I am home, my Mom is in town taking me to the clinic every few days to get blood drawn and make sure my levels remain okay - so far so good and the medical team remains very happy with my progress.

Interestingly the transition home has been a little challenging.  There is much I can't do just yet but it will all come in good time.  It is nice having my Mom here and we also had a nice visit with my Jim's sister Gina and her husband George.

Wonderful seeing everyone I've managed to run into so far - getting some good rest and so very grateful to be home.

Thanks for checking in and talk to you all soon

With love
Maureen

Wednesday May 6th

Good afternoon!
Another encouraging day at the clinic.  I am now  at 100% of my donor''s immune system which is as good as it can get at this point.  My Mom arrived today and will be both my great comfort and my chauffeur to/from clinic visits in the upcoming weeks.

On the health front...My creatinine level (kidney function indicator) continues to trend downward -  this has been a challenge to manage given the insult to my kidney from the  chemo combined with some of the drugs I am taking.  Anyway we saw a significant drop from last week which is awesome!

All this plus my my strong blood counts bode very well for my recovery.

I will let you know when life brings me back to North Andover.  Thanks for checking in

With Love
Maureen

Monday May 4th

Greetings to my wonderful friends and family!  I am out of the hospital (again!) after my last trip from the emergency room.  What an incredible team at Beth Israel so quickly diagnosing the reasons for my labored breathing.  I  was discharged to the capable and loving home of my cousin Mark, his wife Karen and my Aunt Debbie.  Mark and Karen live three blocks from the clinic and the walk too/from has been restorative (and gets a little easier every day).  Aunt Debbie (who lives in Sharon, MA and is staying with us at Mark and Karen's) has been my companion for the trips to the clinic and my Mom takes over again on Wednesday May 7.

Joseph returned from Spain and it was wonderful seeing him, Emma and Jim over the weekend.  He had an amazing time (those of you who are privy to his snap chat story can tell me just how amazing - wait, don't tell me :).  My dear friend Denise Rao Monahan spent the evening with me Sunday and made me a beautiful dinner.

Each day the news gets a bit better for my health.  The main measurements for now are my blood counts - virtually all of which are now my donors.  White cells back to normal and platelets climbing. Also. my creatinine was getting a bit out of whack (again!!) but stabilized and is not coming down.  This is great news as it tells me my kidneys are getting stronger.  Also it helps the doctor's know they are on the right track with the levels of some of the drugs I am taking to fight graft vs host disease (see earlier posts).

I was talking to Emma and we were listing the holidays I missed including Christmas, New Years Eve, Easter, Valentines Day - she also mentioned International Dance Day and my cousin Mark mentioned Law Day.  Enough already!!  Actually Emma had great humor and acceptance about this whole journey - I can learn a lot from her :)

For now I am still going into the clinic every day - next step is home to North Andover.  I hesitate to attach a date to my return home - last time I thought I was going home I ended up in an ambulance going to the emergency room followed by re-admittance into Beth Israel.  BUT - the perennial optimist - should things stay stable this week I may be headed home by the end of the week.

Thank you for all  your love, prayers, and support.  I am so very blessed.

Thanks for checking in
Love
Maureen