I’m totally over it! Today is our fourth snow/cold day this year, this month, I should be sleeping in now but I was wide awake so it was time to start moving. Time to enjoy the quiet before everyone else gets up.
Wednesday night I did the Hockey Practice run, a drive that might take 35 – 40 minutes, well it took us 90 to get there. On the bright side it was only 50 minutes to get home with only one Jack-knifed truck and three vehicles off to the side – what a positive reminder that slow and steady sometimes does win the race.
Austin had his 2nd Rituxan (Rituximab) treatment on Thursday and thankfully with the weather and traffic conditions we weren’t on the road during peak rush hour. We still ran into a small back-up with speeds ranging anywhere from 10-55 mph. We arrived with time to spare to stop at Biggby. I got Austin his Mt. Dew and picked up my Mocha Mocha, which ended up being free, another indication that we spend far too much time at Henry Ford Hospital.
Dad ran into traffic as well but arrived in time to go through the start of the process with us – we go to room 5 where they put in the IV port and take blood if any labs are ordered. It took a little longer because they had problems getting the IV port in, said his veins are probably scared from all the blood draws and IVs. Four tries and three nurses later we were finally able to move to our treatment chair.
We do a lot of waiting, first we wait for the pharmacy to send up his meds. Next we wait for the Benadryl to take effect, than we wait for the Rituximab bag to empty into his body. They still have to start the drip very slowly and watch for any side effects, so far there have been none that have caused us to slow the process or interrupt the infusion.
We had to be there by 10 and at 11:15 we still hadn’t started the infusion yet. Austin was hungry. He’s always hungry lately, more than usual, probably due to the steroids he takes. I made the run to the Coney across the street and ran into a waitress who remembered me (and Austin’s order) and was once again asked “Why are you here?” Honestly, it’s not by choice. Infusion started at 11:40. Dad stuck around awhile but then we sent him off to work. The delay messed up my schedule, my planning, so Gramps came to the rescue and picked up Gen from school
The Benadryl makes Austin tired but never knocks him out. This is the worst side effect we see so we can’t complain. Although, today after spending 4 hours in the Chemo Suite (lab or whatever you want to call it) I feel like I have side effects – must be in my head. We had a different nurse today but our nurse from last week (Darlene) stopped by to say hello, as nice as our staff is it’s not a good sign when you become very familiar with everyone. Darlene I learned last week is Canadian, from across the border, the dead giveaway was how she pronounced our last name “Nada”. No one in the states gets “Nada” out of “Nantais”,J.
The Chemo Suite isn’t exactly the place anyone wants to be, everyone is dealing with something, waging their own war against cancer or something like what Austin has. It’s somber but not depressing because I’ve never seen the look of defeat on anyone’s face. Many are there alone which makes me sad. I know sitting by Austin’s chair I can’t do much but I’m there, if he wants more ice for his Mt. Dew I can get it, if he wants more crackers there is never a wait for the nurse to come by. Some people might tell others not to come along, many may not want to go, it’s like going to a funeral home, nobody likes to do it but the reason for going is to support a friend or loved one during a difficult time. If you’re given the choice, take the time, go, and go even if all you do is sit quietly by their side.
As for treatments we’ve got two down and two to go. They did another blood draw Thursday, before the treatment, hemoglobin is at 8.6 (up from 8.3 on Monday) which is good, still a long way off from normal. I’d be happy if we could just hit the 10.1 number we had after the spleen was removed. White Blood Count (WBC) took a huge jump from within the normal range (just under 10) to a little over 15, not sure why it jumped so much from Monday but from what I understand the steroids can have an impact on WBC, our treatments may have an impact as well.
I’m a little guarded on the numbers – we’ve gone up so many times only to go back down I just don’t get overly excited. I’m hoping and praying this works cause I fear we may be running out of treatment options. Thankfully, this doesn’t impact Austin at all, he’s all about the here and now. If his simple needs are met he’s happy, he has no worries about what tomorrow will bring. That in a way keeps me a little grounded, helps me focus on the here and now, what truly matters. He is thinking about his birthday, which isn’t until the end of March and Mom’s putting him off, reminding him we need to get through dad’s birthday in February before we think about Austin’s. Told me he wanted a new bed sheet set – really? I told him I thought he was good on bedding.
This week I was a little better prepared for the after treatment scenario. I borrowed my sister’s baby monitor (she had one for the grand children) so I rested better in my bed instead of on the couch. He did well, only complained of feeling a little dizzy (he could have been nauseous but I don’t think that’s a word in his vocabulary, just like when the doctor asked him in the hospital “does your abdomen hurt?” he won’t ask what’s an abdomen he’ll just say “no”.)
Monday we have another appointment downtown at the hospital, something that was scheduled with our discharge from the hospital. I don’t even recognize the Doctor’s name, there were two large teams of doctors who always made the rounds. This doctor is with Infectious Disease. I’ve debated cancelling the appointment but I didn’t, we will go, but if it turns out to be just a waste of time, another trip, another co-pay, for someone to simply ask me “How is he doing?” I’m not going to be a happy camper. Yep, doctor or not, you might want to say a prayer mama bear doesn’t give him a piece of her mind.
Monday is also our blood draw day so I’ll figure out what I need to do to have it done there instead of making another trip to Wyandotte Hospital.
I’m tired of doctors, tired of hospitals, procrastinating for myself just a bit. It’s that time of the year to schedule my mammogram and my full-body check (dermatology – history of skin cancer and melanoma in my family) I just don’t want to have more days of the week with appointments than not. Our calendar used to be filled with Gen’s hockey, now medical appointments are almost as frequent as hockey, I like hockey much better J.
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| “A hero can be anyone, even a man doing something as simple and reassuring as putting a coat on a young boy’s shoulders to let him know the world hadn’t ended.” ~ Batman Austin is my hero! |
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| We sometimes measure time by the bag on the right. I |
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