Monday 8/31/15

Back to the clinic today for my infusion chemotherapy.  This runs 7 days back to back and so far no debilitating side effects which is awesome.  I remain home traveling into the clinic daily for the chemo and red blood/platelets as needed (I've needed one infusion of each thus far).  Just today I became neutropenic meaning my infection fighting white blood cells (neutrophils) are below the optimal level making it more difficult for me to fight off infections.  This was expected as the chemo is reducing my blood counts in general.  So I am back to my 'robbing the bank' look (mask and gloves),  a restricted diet and some restrictions on activities.  The counts should recover within a week or two.  In the meantime, the low neutrophils does not impact the way I feel - still have good energy and appetite etc. for which I am so grateful.  And even though a good chunk of my day is at the clinic, it is such a blessing to be home every night.

One frustration is my insurance companies denial of my pill chemotherapy.  After almost a week of appeals, it looks like they will approve the pill which I hope to start within the next couple of days.  Hopefully this will not compromise my treatment.

Emma continues to cram in last minute summer fun and I thank the people getting her from point A to Point B.  She starts school this week with two half days.

Joseph is doing well at Bowdoin and starts classes Thursday.  We sent him a care package the end of last week which included cookies (from Emma), some photos, and his high school AP Calculus notebooks.  He requested the notebooks - the cookies are all me...the notebooks definitely Jim.  Thank heavens they did not fall victim to my manic cleaning out of 'all things last year'

Well that is it for now - thanks so much for checking in and have a wonderful week.

Thursday August 27

Well this relapse has certainly thrown me for a loop.  It is taking a bit to shake off the shock and disappointment and remember  all that is good and hopeful.

Here is the latest and greatest on the kids...Jim and I had a lovely day at Bowdoin with Joseph.  We took care of some logistics, had a nice tour of the campus,  Joe got reacquainted with the track coach and he really likes his roommates.  He is off to a great start. He started off with a trip that is part of the orientation - it involves Kayaking, canoeing, and spending a quite uncomfortable but very fun couple of nights under a tarp sleeping on the ground.  All good but the Staudt house is a bit too quiet.

Emma is having a busy last couple weeks of summer - she is getting in a fair amount of friend time which includes a week at volleyball camp.  With me going to the clinic daily  she has also been going from friend's house to friend's house and having a great time.  Once again we are amazingly blessed with great friends.

I ended up starting chemo this week (grateful  to my medical team for starting after the Joseph drop off).   The port was placed today.  This was followed by the chemo infusion; pretty quick and straightforward...no side effects or bad reactions.  This  particular chemo regimen is not nearly as toxic as my last and most people do quite well.  Truly I feel just as good as I've felt for the last several weeks.  Side effects may come over the course of the next couple weeks but so far so good.  My chest where the port was placed is an ouch fest but this will pass.

One big question on all our minds is my overall prognosis - here is how things were explained to me.  This treatment has worked on others in my situation.  A relapse of leukemia  relatively soon after the transplant is concerning but a realistic outcome with the chemo coupled with the boost of donor cells is to get me back to remission.   I have faith until further notified (thanks Arline for the saying and hope I got it right).  I don't know when we'll have a measurement of whether the treatment is working.  Ultimately it will be the  next bone marrow biopsy that gives us a definitive answer.  I'll  keep you posted on any directionally good news and also when the next biopsy is scheduled - we are probably at least 2 + months out.  In the meantime my posts may consist of updates on my appetite, good books I am reading and how the kids and Jim are doing.  Bear with me!!

Thanks for checking in

Monday Update 8/24

Jim and I were in the clinic today and I have a sketch for my treatment plan..The most likely scenario is I will start chemo Monday.  It will be outpatient (can I get an AMEN) with two types of chemo - one taken intravenously and one as a pill.  The intravenous chemo will run 7 days which means I'll be going to the clinic 7 days in a row for the one hour infusion. After the 7 days of the intravenous chemo, I will be in the clinic once a week for a check up.  Simultaneously I will be taking chemo via a pill for  a total of 21 days (7 of which overlap with the infused chemo). 

The plan is for two cycles of this chemo regimen.  

After the two rounds of chemo the plan is for me to get a booster infusion of the original donors cells.  These donor cells will help boost my immune system (again!) to fight off any stubburn leukemia cells.  They will go back to the original donor and procure those cells closer to the date they will be needed.  

There will be more to tell later in the week - for now doing the last minute packing to get Joseph off to school!  We leave for Bowdoin in the AM!!

More later - love Maureen

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