On Thursday July 12th my mother (M, or Mom, Marina) went for her regularly scheduled check up and treatment of one of her shots but she was holding a fever. I picked her up from getting a blood transfusion at about 5 pm that day. Since she had a fever and pneumonia, her doctor advised her to take a prescribed antibiotic for 24 hours to see if she maintained her fever and let us go on our long weekend to Ortley. It went down but about 2 am Saturday morning (7/14) or to me, Friday night as I was still up, nervous that it would spike again, it did. You can just tell by looking at her sometimes. She let go of the fever and of course maintained the pain in her legs. On Saturday afternoon (7/14) she felt refreshed enough from her transfusion and antibiotics that we went shopping in Lavalette. Pain in her legs had seemed to be minimal but her mobility was compromised. She pushed on though, walking two blocks to get some new clothes that fit her since she has lost a lot of weight. She did great all day Saturday and we ended our beach trip Sunday (7/15) afternoon. She was up and packing and walking around and refreshed. I left her house at about 4 pm Sunday thinking she was feeling better.
Monday 7/16 she awoke at 7 am with a 104ยบ fever and couldn't walk. She couldn't even muster up the energy to put her feet on the floor from the bed. She gets a fever from her condition (MDS). Sometimes its low grade and sometimes it's high grade. We eventually got her out to the car and drove her to ER. (Side note: I had on my sunglasses and walked directly into the revolving door of the ER, banging my head. About 5 strangers, 4 staff members 2 of my aunts and my cousin witnessed this. It was quite embarrassing.) She was scheduled that day to check her levels and get another shot at Steeplechase but they admitted her that night around 10 pm. She stayed in the hospital from Monday 7/16 until Friday 7/20. This is honestly a paraphrase of our week:
(7/16) Monday: We met with the ER nurse. M had a fever. She had blood cultures done. After a short while we met with a Physicians Assistant (PA), her GP doctor, and a doctor from Steeplechase. Every time she meets with one of these people she has to tell the entire tale of what has been going on over the past year and a half. You have no idea how frustrating that is, especially when you're ill. Thankfully she has her army on her side to fill in the gaps and missing information. After the third time re-telling the story we were all exhausted but she lied there very calm and told them what she needed to tell them, laughing with a Dr. I now know as Dr. King but she was calling him Dr. Smiley. She requested that when she go back to her GP, she gets Dr. Smiley. She likes him. One of her Steeplechase Oncologists (Dr. Young, you can see him on the commercials) had come in this night and ordered a platelet transfusion since hers were low ***(Jaclyn's note: well, she had a fever... platelets sometimes don't sustain with infection, fever, etc. duh. I know that.)*** They took her down for an MRI of her legs to see if she had developed clots or anything else that could be causing her so much pain in her legs. I believe she also had another x-ray of her lungs being that she had pneumonia the previous month. At one point I heard a Dr. mention that her bone marrow could be expanding causing her bone pain. There are always 300 answers to our questions but none of them seem to be the right answers. We had arrived there at about 1230 pm, and I believe she was admitted at 10 pm, I had left at about 830pm, feeling guilty of course.
(7/17) Tuesday: I went to work until about 11 am and headed back to the hospital for the afternoon. She may have had a fever in the afternoon, I can't remember at this point - but she could not walk. She was actually chained to her bed and I kept calling it "House Arrest" because if she tried to get out the bed an alarm went off and the nurses came. She had more blood cultures done and a fever again that night. We were told she would be kept there for 3 rounds of blood cultures, as they try to do a best 2 out of 3 with those tests. Her platelet transfusion didn't take, and one of her oncologists suggested that she receive NO MORE platelets because they weren't holding. ***(See Jaclyn's note above). At this point, she was annoyed that no one was letting her walk or try to walk because her worst fear is being stuck in a wheelchair. I believe she had a blood transfusion this day. They also told her that she had developed thrush, which is like a yeast infection of the mouth. They began giving her lozenges for this and repeatedly asked if her throat was sore, which it was not.
(7/18) Wednesday: I went to work in the morning and returned to the hospital again in the afternoon, probably about 2 pm. We had heard that her first two blood cultures were negative for infection. She kept getting fevers in the middle of the night however. Wednesday she asked to walk around and was allowed to. She was sitting in her pajamas (not he hospital gown) and sitting in her recliner. She was allowed to walk with assistance. Her nurse told us that her doctor would be in to see her eventually. We waited 5 hours to talk to her doctor. Eventually my aunt went and asked him to come in, as his usual MO is to wait until my mother is alone (which is rare) and give her bad news. We did not want this to be the case again. He came in telling us that he wanted to do one more blood culture on Thurs and that the infectious disease doctor would be in to check over her cultures and in to see her on Thurs. They still had no explanation for the pain in her legs but put her on a steroid (Prednisone) and once she had that she could walk. She may have gotten that on Tues. By Wednesday tho she was severely aggravated that she was back in the hospital, again, with no real clue when she would be able to go home.
At some point either Wed or Thurs - I wasn't there at the time - the doctor (a woman, I still don't know her name) who told M last month with the pneumonia to go home, get comfortable and call hospice because she only had a few months to live and there was nothing else they could do for her, came and in and said, "Well, your platelets are going up - I don't know why someone would give you platelets when you have a fever, so you may be getting another platelet transfusion." DUH. That's what I said lady!!! *** see note above.
We have asked this woman to not come into my mothers room anymore because 1) she had never dealt with my mother before - just to tell her she was dying. 2) She oversees all the doctors in the oncology department where my mother gets her treatments and in about 1.5 years has never introduced herself to any of us, including my mother. 3) she never signed in on the nurses log that day to tell my mother the bad news when she was ALONE last month, so we couldn't find her for a few days. 4) If she oversees this particular staff who gave my mother a platelet transfusion and then had another one of her underlings come in and say that she wasn't allowed to get more platelets and frighten my mother, letting her give up hope for her health AND then says, "Oh you can have more platelets because you were given platelets in the ER when you had a fever..." she shouldn't be doing what she is doing because she is not doing it right! (Last month my Aunt Sandy laid it in to the Dr and told her she was not allowed to go back into my mothers room. She didn't listen, obviously, she's come back twice). I saw her in the hospital twice this time around and twice I gave her my infamous "I don't approve of you" stare. My mother had a fever overnight, so she was not released Thursday.
(7/19) Thursday: Same thing. Went to work, left early, went to the hospital. Hung out there in the afternoon. I believe my mother received the platelets again on Thursday around dinner time. Eventually the infectious disease (ID) doctor came in and said what we've all been saying all along, M doesn't have an infection, its more than likely that the fever is from her MDS. Thanks, you bunch of overpaid and under worked geniuses. However, the ID wanted to get a CT Scan of M's lungs in case she had any residual pneumonia and they couldn't see anything clearly on her x-ray. What they found was nothing, or residual pneumonia, or possibly blood clots, but they can't tell. She was up and walking on her own, just holding onto to her IV pole, and no more pain in her legs. If there was any, there was minimal. We got word that she would most likely be going home Friday.
(7/20) Friday: I didn't go to the hospital that day because I knew she was going home and my family was going to be there with her and I was going to see her out of work anyway. She was released with a few prescriptions, no answer about her legs or lungs and no fever, able to walk with minimal pain. I never believed she actually had thrush and neither did she. One of the nurses "didn't see anything" and one did.
She was fine all weekend... she went and got her hair done on Saturday (7/21) and Sunday (7/22) I took her a graduation/birthday party. She was really good all weekend.
So, today, Monday (7/23) She calls me to tell me that her numbers from Friday went from a 8.0 to 8.9 blood count (which is great for a woman her age), her platelets went from about 9K to 18K (which is still low but great for her to double over the weekend) and her white count was up (no infection). It's absolutely amazing how much difference a day makes.
She wanted to go out and do some errands today but realized that it is probably too hot for her so she is just going to relax in the comfort of her own home this Monday. Our new saying together is, "What a difference a day makes!" Really, we don't stop saying it!
Unfortunately both treatments that she has had with Steeplechase (first Vidaza, then Dacogen) for the MDS are not eliciting a response, or the response her oncologist wanted to see. She has an appointment tomorrow with a doctor at Robert Wood Johnson for more information for an intense chemo treatment. It is probably a 7-8 day cycle and about a 4-week controlled environment hospital stay. There is about a 50% chance that the disease will go into remission. That is the choice she is taking for her next step, I believe, unless otherwise advised tomorrow at her appointment. I will update again when I have more news on that.
I hope all are well.
“We should consider every day lost on which we have not danced at least once. And we should call every truth false which was not accompanied by at least one laugh.”
- Friedrich Nietzsche
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