The Ups and Downs of Recovery

Sunday morning, May 25, Deb woke up with a queasy stomach.  She didn’t have much appetite and couldn’t finish her breakfast, which is usually a fairly substantial meal for her.  Andy was here, and they had planned to go to the Palo Alto Ecstatic Dance that morning.  Deb had asked and received permission from her nurse practitioner to go, as long as she wore her mask and gloves and didn’t touch anyone.  So off they went – dancing is one of Deb’s favorite activities which she has been missing, and this was a treat – a real high for the week!  Later on, Deb’s stomach was bothering her again, and she had very little appetite.  The next morning (Memorial Day) she was nauseous and began to throw up whatever she ate or drank.  We don’t believe there was any correlation between the dance and the sick stomach, as her stomach was already feeling unsettled early Sunday morning.

Deb is still monitored closely with appointments twice a week in the Apheresis and Infusion Treatment Area (ITA) of the Stanford Cancer Center, an outpatient facility for oncology and hematology patients.  Post-transplant patients often require blood transfusions, IV hydration or IV antibiotics, as well as apheresis treatments which include removing a blood component, treating it, and returning the treated blood to the patient.  There are several areas at the facility; one for simple blood draws, another area for post stem cell/bone marrow transplant patients, and a third area for patients receiving outpatient chemotherapy for solid tumor cancers.  The medical staff consists of aides, nurses, nurse practitioners and physicians, all trained in caring for oncology and transplant patients.  In the post-transplant area where Deb is seen, they treat an average of 60 to 80 patients each day.

Deb is required to wear her HEPA filter mask in the ITA waiting room, but is allowed to take it off when brought into the treatment area.  They have comfortable reclining chairs for the patients.  We are greeted by a medical aide who weighs Deb, takes her vitals (temperature, blood pressure, oxygen level, and heart rate), and provides juice and warm blankets (it’s always chilly in there).  We have learned to bring snacks along so we don’t get too hungry, as there is a lot of waiting time.  Next the nurse will come by, assess Deb’s condition that day, and draw her blood for a complete blood count (CBC) and chemistry panel.  The CBC gives the white cell, red cell and platelet levels, and the chemistry panel shows the body’s electrolyte balance and how the kidneys and liver are functioning.  Because of the chemotherapy Deb received and meds that she is taking which can affect the kidneys and liver, these organs have to be monitored very closely.  Blood is also drawn to test for levels of the immunosuppressant drug which Deb takes (which functions to prevent graft versus host disease), and the dosage is adjusted as needed to keep it within the desired therapeutic range.  It takes about an hour for the blood results to come back.  When the blood counts are in, Deb’s nurse practitioner (NP) visits us and reviews everything, answers our questions, provides advice and suggestions, and writes any new prescriptions that are needed.  Deb is lucky to have Tammy, a wonderful NP, assigned to her. While the nurses may vary from visit to visit, Deb generally sees Tammy each time.

So, now let’s get back to Memorial Day morning when Deb was not able to retain any food or liquid.  I called the ITA, which is open every day (even holidays and weekends) and explained Deb’s situation.  They said to bring her in so they could give her IV hydration to prevent her from becoming dehydrated.  Maintaining adequate hydration is particularly important due to some of the medications that she is on.  Thankfully Deb has not required any blood transfusions since leaving the hospital on April 8, so this was the first time she needed an infusion treatment since her transplant.  We went back to the ITA on Tuesday for Deb’s regular appointment, and she was again given IV hydration.  She is now feeling better and able to consume adequate amounts of liquids and food again.

Currently Deb’s blood counts (white, hemoglobin and platelets) are all just below the normal range.  The doctors consider her counts stable and normal for her time frame (Day +71 post-transplant).  Deb still requires a lot of rest and deals with fatigue, but that is common.  For every couple of energetic ‘up’ hours Deb has, she needs as many ‘down’ hours resting to regain her strength.  Overall the doctors are pleased with Deb’s progress and stress that patience is important as recovery from a bone marrow transplant takes a long time, at least a year.  We know there will be more ups and downs in the future, but are hopeful that Deb will maintain her steady progress in the right direction.  As always, we thank you all for your continued support, caring and prayers for Deb, which have helped her so much during this journey.

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4 Responses to The Ups and Downs of Recovery

  1. Joanne OCConnor says:

    I’m sure Deb will continue to improve. Just her desire to go out dancing again is a good sign. Sometimes one has to take a half step back to be able to take a whole step forward. God bless you Deb and also your Mom. Joanne

    Sent from my iPad

    >

  2. Deb – hope you keep getting better!!! Lots of Love and Strength!! You are the best to go through what you have and get stronger!!! Good KARMA to you!!!!

  3. Ted Barber says:

    Our prayers continue and your progress is fantastic! No road is totally smooth especially the road to recovery. May God continue to bless your progress toward a complete recovery and the ability to keep on dancing.

  4. Michele Giglio Uy says:

    I’ve been thinking of you so much lately Deb (and Mary Lou). You are on my mind often during the day and I only wish you could feel the love I am sending your way. Slow and steady wins the race. You’ll be dancing again before you know it. Hugs. Michele

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