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Showing posts from April 8, 2018

Texts Between Me and Allison, Pain and Palliative But No Chemo?

My niece, Allison was invaluable to me during this time. Here are texts between us regarding Mathew’s low white blood count, his next appointments, my fears that they have given up on him and another caregiver tip. Txts betweem me and  Allison Two days ago Mat had to come back to Moffitt.  Spiked a fever and had diarrhea. No infection and only the one fever spiked  but his white blood count low and still dropping. So until they rebound to a certain level so here  we sit.  Good news is 95% of the swelling in his legs is gone. Sent March 24                                   Sorry. Didn't know you guys went back.                                    Sorry I've been so preoccupied with work.                                    Good he hasn't had any more fever and no                                    evidence of infection but yes have to                                    stay there on IV antibiotics till  neutrophil                    

Texts Between Me and Mathew

You can tell already Mathew is feeling better, in less pain and better able to function mentally, after only one chemotherapy treatment. This is still his first return admission with a fever. Texts between me and Mathew Can you call me. Sent 3-23-14 Will bring toilet paper. Sent 3-23-14 Deodorant too pls. Rec’d 3-23-14 Ok Sent 3-23-14 Pen and book I was reading pls Rec’d 3-23-14 Need to disinfect it. Rec’d 3-23-14 Ok. Sent 3-23-14 And maybe baby wipes. Rec’d 3-23-14 I think that should be good. Rec’d 3-23-14 Ok. Going to run over to Tia’s, then grents then get cleaned up to come. Sent 3-23-14 No rush. I think Diane is coming for awhile. Maybe you should give her a call. That way you don’t need to rush here. Rec’d 3-23-14 She said she was coming. Plus I know Nick is there. Sent 3-23-14

Texts Between Me and Diane Swelling Going Down

I think the frequent hospital stays weren’t something any of us expected but everyone rallied to keep someone with Mathew 95% of the time. Sometimes Mathew sent one of us home before the other had arrived because he still needed alone time. I remember this hospital stay. It was one of the smaller rooms. I slept in a chair. Mathew still needed help getting to and from the bathroom. Mainly, getting the IV unplugged and pushed into the room for him. One time when I was helping him put on his slippers, I remember seeing one half of his foot was still swollen and the other half wasn’t. It was so odd and by the next day, the swelling in the entire foot was gone.  Texts between me and Diane Good Morning. I could go up there and relieve Arpie in a little while and let Russell visit a few minutes. Then I could stay through the day and give you a break. Let me know. Rec’d 3-23-14 Ok, That would give me a chance to clean his ‘apart

First Neutropenic Fever Hospital Stay From Mathew's Journal

From Mathew’s Journal  First Re-admittance 3//22/14 - Keeping track of diarrhea, went to Moffitt. Adjustment in meds for admittance and cultures, x-rays and everything looks good so far. There is some question about a Paracentesis, which is not something that I had done. Have to make sure that it did not show up as having been done. Not sure my writing is making sense. My stomach hurts less and less. 3-22-14 A resident informs me that I’ll need to stay 48 hours. He says the nurses usually give the 24-hour answer to keep people happy.  - exceptionally frustrated but for the best I suppose. ANC - 130 need about 500, normal is 1000 Chemo makes count go low in the first place _ cell replicating    kills cancer cells and normal cells.    causes diarrhea -GI cells replicate, not well. ****ANC = The absolute neutrophil count or the number of white blood cells that are neutrophils. It requires math to get the bottom line.  This is what determine

Neutropenic Fever After I.E. Chemo and The DRC at Moffitt

This is what happens when Mathew’s white blood count drops as an after affect of the chemo and causes a neutropenic fever. This is the first time it would happen and it always seemed to happen late at night. Eventually I could look at Mathew in the morning and knew he would have a fever before the night was over.  Here is a perfect time for a caregiver tip . Keep a go bag packed and in the car or by the door. My friend Sandra gave us a really nice overnight bag to function as our go bag. That way Mathew and I only need to grab his journal and meds for traveling ( The Monkey Bag) and get in the car. 3-21-14 The diarrhea mentioned in the last post was a symptom of his white count dropping. At the time I thought he had had too much pineapple juice along with the MiraLax, trying to combat the painful constipation.  As I remember it, his fever just started creeping up a bit in the early evening. I had put the one page of instructions with the Sarcoma Clinic 24 hour phone n