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The JoJo Report

Donor Bill

Caregiver Bloopers

Unit 4B Tour

If You Plan to Visit

Tomorrow is transplant day for JoAnne. She has been doing reasonably well the last few days although she is starting to feel some side effects of the chemo. Today was also Radiation Day. During her work-up last month, she visited the department, and they took numerous measurements of her in the special position she assumes for dosing. They use those to formulate the radiation dose. She has been anxious about the procedure ever since. It would be nice if you could just lay in a machine like a tanning booth, but that would be too easy. Instead you sit in a scrunched up, knees to the chest position that is uncomfortable. First they dose for 15 minutes on one side, then spin you around for another 15 on the other. They tape you together so you don't move. She told the techs she wasn't into bondage so they went easy on her. JoAnne has endured many diagnostic tests, but this one had her unnerved. Thankfully it is now in the past and was manageable with a bit of Ativan, a relaxant. Where can I get those?

I talked with Donor Bill today and he is feeling less than perky.  They have been injecting him the last 4 days with Neupogen.  It is a colony stimulating drug that revs up his production of stem cells and leaves him with flu-like symptoms.  He will get one last shot tomorrow morning and then undergo apheresis for 6 hours. Hopefully they will get all the cells they need in one sitting. Gratitude is a word wholly inadequate to describe how we all feel towards Bill and his role in JoAnne's treatment. May the side effects quickly pass.

I failed in my first trial as a caregiver and am probably not engendering the type of confidence that JoAnne needs.  On Wednesday, she handed me one of those lightweight plastic bags you get from Target or the grocery store. She requested that I have the contained items laundered. It included her favorite pajamas and some lady dainties. Each day we go over the to do list and by Saturday, I had to fess up that I couldn't find the bag, nor did I have any idea what I did with them. She did not take that news well even with my generous offer to promptly replace them. In fact, JoJo was so displeased that she was venting to Nurse Jackie about how her caregiver husband had lost her favorite pajamas and undies. "Were they pastels?", asked Jackie. As it turns out, she had found them in the unit's sunroom commons area on the coffee table. Now I remember where I left them!!

On my way out on Wednesday night, I had stopped to take a few pictures of the unit to include in the blog. I set my shoulder bag and the undies bag down and only picked up the first. While you are praying for JoAnne's health, please put in a good word for my clarity of mind.

   

Take the elevators to 4 and head for the doors of 4B. This is not the floor you want unless you really need care. It is all ICU's and BMT. Serious stuff only. Head through the doors and down the long hall. There are 22 isolation rooms and one thing you rarely see is a patient. Room doors alarm if left open more than 30 seconds. There are windows on most rooms but the blinds are almost always drawn. The unit is shaped like a V with the nurses station at the center. It is the hub of activity for the staff. They have small riding floor scrubbers that come by about 3 times a day. Now there is a retirement job I could get the hang of. Just like groundskeeping at the golf course with always perfect weather and no wayward golf balls to dodge.

JoJo's room is way down around the end and is the last one before the rooms become ICU. We were feeling a little left out, but now we are beginning to warm up to it. While small, that does make it easier for trips to the bathroom when hooked up to the infusion pump. We are slowly getting it dressed up and making it homey. We've got adequate seating, visitors are well accommodated and we brought in some book shelves for all her pictures and tchotchkes. Plus, we have had a few visitors tell us it was bigger than they expected. That just tells me I am getting too full of myself in terms of expectations. I can get away with it however, under the guise of my role as patient advocate. Perhaps I should focus on handling the laundry properly before I move on to more high profile issues.

If you wish to visit, please give me a call or email. We can make sure JoAnne is up for visitors, and I can save you some hassles in getting to the room. The parking ramp is a block or two away, but they do have valet parking during the week until 8 PM. It works very nicely. I also have a parking pass that we can use during the week which makes it far more cost effective. The ramp rates for visitors are unfairly high. There are also some meters within a block or so that are convenient. I will check on their rates.

The beat goes on. Tomorrow is one week since admission, and the day we have been targeting for the last few months. Please pray mightily for our JoJo.

Cancer sucks