Wow - sorry for the blog writing dry spell but with good reason.
Still walking on clouds with the news of the biopsy showing no leukemia. Thanks for all your beautiful prayers and support - and a heartfelt thanks to God who has walked beside me and continues to carry me through this remarkable journey. We still have a ways to go to keep me healthy and firmly in remission and so many, many things on our side to get me there. Okay take a look at what a difference a couple weeks can make.
First the social side...we have had some lovely times with friends and family (by this point friends are family)...anyway, a lovely dinner with friends the weekend before last. One of Emma's best buds Jane came to join us with Jim/my best buds Kirsten and Glen. They brought their dog Cash who enjoyed Guinness's company for a good portion of the evening and was disappointed he could not find Guinness' off switch. We left them outside for as much of the evening as possible. My cousin Margein joined us earlier in the afternoon and we went to Michaels Crafts (what a trip of love) where Margein and Emma found lots of stuff to make homemade gift tags. We brought home our haul and Emma and Jane made some really clever tags. Very fun and festive evening with everyone enjoying the Staudt meatballs from their secret family recipe!!
Christmas decorations are 99% of the way up and will not get to 100% this year.
Now on the AML side...This past Tuesday I received the donor cells and my cousin (by marriage to my cousin Joe) Jane was with me during the infusion. All went well with no immediate complications or side effects. Awesome day and lovely of Jane to keep me company.
Thursday had me back at the clinic for platelets and a scheduled CAT scan for my lungs. In late Oct/early Nov I was admitted to Beth Israel with a fever that always is alarming when ones white count is low to non-existant. Anyway I had a CAT scan then which showed some inconclusive but suspicious shawdows on my lung that could have been pneumonia. I was given antibiotics and sent home after several fever free days. This recent CAT scan was to see if the pneumonia was still there and it was/is not hooray!!
BUT (why is there always a but) I was exhausted all day Friday (like struggling to get down the stairs tired) and began to notice my chest and torso were bright red. By Saturday I had a full blown rash (again!!) mostly on my arms, torso and neck which spread throughout the day. I already had a Saturday morning appointment to which my friend Karen drove me and wheeled me to (I don't want to get used to the wheel chair but it is sooo nice when you need it). Jim and Emma were at her High School placement exams. Karen and I have known each other and been good friends for years and she is also Mom to Joe's sponsor from last year's Mr North Andover (Megan Collins - Joe's ringer). It was so great to spend time with her. We also met up with my Aunt Debbie and cousin Kathleen. I rarely get to see Kathleen as she lives in DC so it was so nice of her to spend part of her Mom visiting time with me in the clinic. Also I ended up being admitted to the hospital and that is always scary news to get when you are alone.
While at the clinic appointment I had my vitals taken (as usual) which showed an extremely low blood pressure and an extremely high heart rate. My poor little heart was racing like the dickens to compensate for the blood pressure. Anyway my BP was so low they needed to admit me and get it under control fast. With the help of fluids and steroids my blood pressure/heart rate improved and I was able to go to my home away from home 7 Feldberg at Beth Israel instead of the ICU. I remain at Feldberg today (Monday) and the earliest I would be discharged is the 16th (some irony here as this is the day I was admitted in 2014).
They are not sure the underlying causes for the fever (oh I had a fever too) the rash and the low BP. A strong guess right now is this is tied to the new lymphocytes from the donor and the contrast liquid I took for the CAT scan. But we may never know - I am just thrilled and grateful they are both under control.
So will keep you posted on when I get out of the hospital. Again looks like it will be a pretty quick stay with the problem(s) I presented getting addressed with very quick, compassionate and effective treatment.
Thanks for checking in on this zigging and zagging journey which always happens to keep going in the right direction!!
Love Maureen
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