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JOURNAL ENTRY: The first 29 Days – May 10 through June 8

June 9, 2011

We are almost 30 days into this journey with Queenie –  a brief overview of treatment so far including symptoms:

Day 1 – May 10: Admission to the hospital directly to the chemo ward. She’s definitely decided to go ahead with the Cytoxan. This exacerbation is pretty bad but at this point we didn’t know how really bad it was.

Day 2 – May 11: Cytoxan Day! Exacerbation is worsening – fatigue, dizziness, speech, no longer able to stand, confusion & disorientation starting – we can’t be sure if this is Cytoxan or MS. In addition, her cough which we’d been attributing to allergies, is now awful. Deep, rheumy & congested, she sounds like a 90 year old man.  She is now on O2 by nasal canula and a Foley catheter.

Day 3 – May 12: One day post-Cytoxan. All symptoms are worsening especially the confusion & disorientation. Paranoia has now set in as well, accusing the nursing staff of not coming to help her, leaving her alone for hours at a time. She also thinks people are trying to kill her by replacing her O2 with CO2. Constant calls from her with paranoid terrified thinking. She’s now bed bound & the nursing staff I think is ready to kill her.

Day 4 – May 13: Rehab bound! Finally, a bed opens in rehab. While she is still experiencing the same (worsening) symptoms, the best place for her to be is rehab. They are better equipped to care for her there & know better how to handle an MS patient with little/no mobility.She is still horribly confused & paranoid and every phone call with her is worst than the last.

Days 5 through 11 – May 14 to May 20: More of the same mental state. She is now thinking we are all plotting to kill her (all except Peepette who is clearly her favorite and the only one who believes her, or so she thinks).  It’s an exhausting 6 days, filled with phone calls to doctors, therapists, Queenie …we’ve given the rehab the OK to let her call us whenever she wants and she does. She is able to get some physical therapy in but it doesn’t seem like enough. As soon as PT is over she is exhausted and falls asleep, leading to vivid dreams of people trying to trap her mattresses and others changing the air in her room so she’ll die.  We’re starting to feel like we’re in Fellini film without an ending and are scared to death for Queenie as she’s clearly terrified.

Day 12 – May 21: Breakthrough!! Almost overnight, her mental status changes. Still confused a little & slightly disoriented, she is no longer paranoid but remembers vividly being so. Physically, she’s a fucking mess but mentally MUCH better. We are relieved  – Big Daddy & I have our first good night’s sleep in 12 days.

Days 13 to 29 –  May 22 to June 8: Mental status continues to improve. Was it the Cytoxan? We’re not sure. Did the Cytoxan help? Still not sure.  Queenie’s physical status remains largely unchanged, with a few victories here and there but overall, much the same. Her vision & dizziness are especially stressful to her since they worsen with fatgue and/or physical extertion, making physical therapy difficult. Her neuro agrees and wants to try a Solumedrol infusion before hitting her with another Cytoxan dose. One June 8, they do the Solumedrol and schedule Cytoxan for the 10th. The very next day, June 9, she is feeling MUCH better – her sight is 90% improved and she even stands and walks a few steps with a walker. By the evening of the 9th, though, her vision is back to being shaky and she’s tired and weak. Still, probably her best day yet – she is back to her old self partially and is back to giving us orders and telling the nursing staff how much ice she wants (OK, so she’d been telling them this all along but it’s only now they can really understand her because her speech is so much better).

Tomorrow – Cytoxan Take 2.

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