Hello faithful BooBooBooB readers. It’s been a while since I gave my very twisted perspective on this so here goes (turn away now if you can’t stand stories about bodily functions):
Today was the third-to-the-last Taxol infusion and I didn’t go. David went which was great for both of them, I think. Unfortunately, Loretta is still on The List (and the List Update) but she is too nice to actually use it when she can for her advantage. As it turns out, she wasn’t on the right list (the one that said she was going to show up today), they got a semi-private space, the drugs were wrong, and the nurse was new to Loretta. It’s never like that when I am there. I’m lucky I guess. Anyway, it all came out okay and now she is alternately tired and buzzing around. The buzzing comes from the steroids that she gets with every infusion. The tired comes from this being the 14th infusion of drugs that are killing or severely wounding parts of her.
Some of you might not know that we came from the East (Right) Coast where we both grew up and lived for the first 17 of our almost 30 year marriage. In the summer on the East Coast it is common to have afternoon thunderstorms that momentarily cool the place off and then add to the steam (the cooling period is anywhere from 10 to 30 seconds after the rain is finished). I loved those thunderstorms. They were sometimes huge and ferocious, sometimes just in the distance so all we heard was the distant rolling thunder.
“What’s this have to do with Loretta?” you may ask. Well, last night, she did the most amazing simulation of that distant rolling thunder that I have ever heard. It was like the real thing. Only it was her guts. The Taxol is going after all of the fast dividing cells in her body including those lining her gut – from mouth to [other end]. This often makes it hard for her to eat (the mouth part), painful after eating (her stomach and intestines) and, later, [redacted]. The thunder simulator was the middle part. It sounded like a distant thunderstorm: active, booming, powerful.
I thought it was amazing and wonderful. She didn’t share my feelings.
She (we) are looking forward to that day when she can really start to heal from the inside out. When she can start to regain her amazing physical strength and rebuild her emotional strength. This has been a hard road and it has made her weak. I still see the glimmer in her eye from time to time and know that it is there waiting for the chance to come back and take control once again. Two more Taxol infusions to go. Surgery (which we will find out more about this Friday) and radiation are next. The thunder simulator’s days are numbered.
Thanks to all of you. The support we have both received has made this a lot easier. It is hard to imagine going through this without all the support we have gotten.
The fourth and final quarter of chemo as begun! I have three Taxol treatments left. I am sure you have all been waiting with bated breath to know if I am on or off “The List.” While my name is on “The List, I am actually no longer on “The List.” I saw the oncologist and he said I don’t need to be on “The List”. So tomorrow I will contact the oncology nurse and have her officially remove me from “The List.”
Speaking of oncologists, after monthly visits, I don’t have to see him for three months. We talked about the on going side effects, particularly the lovely mouth sores. The way to really get rid of them is to delay chemo for a week. Well he know I wouldn’t go for that. I would rather deal with the mouth sores than prolong the chemo. He did say to me “You know, I threw the kitchen sink at you.” Well sometimes I feel like I was hit by a kitchen sink.
This is a picture of me when I was cold. I love blankets out of the warmer.
I was still cold. As you can see there is the cup of ice I chew to help with the mouth sores. I don’t wrap my feet in ice anymore. The baby toenails are goners no matter what.
I finally warmed up enough to remove some of the blankets.
Scott hanging in the chair. Claire took these photos. They were both with me for the day’s activities.
Me and my pole posing in front of my room.
Claire FaceTimed with Diana. Gabrielle was my nurse for the day. If you look closely in the upper left of the iPad, you can see my port being flushed. Poor Diana, that was what she was watching while we were sticking out our tongues. I have the best siblings in the world!
I realize after reading comments that my last post sounded like SCCA is disorganized and full of unnecessary red tape. That was not what I intended to convey with the post. It is very important to keep germs contained to the current germ holder and not spread them. Does everything run as smooth as silk, no, but I think it runs as smooth as it can.
Hundreds and hundreds of people are serviced at SCCA everyday by hundreds of hard working people. Do things get mixed up now and then? Of course. But, when I had an issue with an individual in the lab, I left a comment card and was called back with in a few days. Patient services was glad to get constructive feedback and I was happy to be heard. If I need to see my oncology nurse without an appointment, she (or another nurse if she is out) is available by just asking to have her paged. If I call to talk to my nurse, she is either available right away or calls back in a very timely manner.
The scheduler for all my appointments works very hard to have my appointments scheduled with the minimum amount of time needed between appointments but not more wait time than necessary. And, I can’t say enough about the chemo nurses. They are kind and patient and knowledgeable. I always feel like I am in good hands during chemo.
So, is everything always perfect? No. But rules and regulations are put into place to keep people safe and healthy. I think people need to be their own advocate, need to speak up when necessary and need to appreciate the work of those who deal with many, many people every day.
ChemoMonday proved to be quite an interesting day. I had been suffering from “the crud” and still had a hacky cough and runny nose. So, when I went to SCCA, I put on a mask so as not to infect other immuno-compromised individuals like myself.
I checked in at the lab (1st floor) and the check in person asked if I was having cold symptoms. I answered in my husky, raspy, cruddy voice that I had a cough and runny nose. I was then whisked into the lab and put into a room where the door couldn’t close fast enough. I had my port accessed, as usual, and left to check in for chemo (5th floor.)
Still wearing my mask, I arrived at the check in counter where the chemo check in person looked at me and asked if I was on “The List?” I told her I didn’t know what list she was talking about. She said since I was wearing a mask I needed to be cleared off “The List.” I told her I didn’t know what she was talking about but that I didn’t have a sore throat or fever. I asked if my chemo nurse had this special power to clear me and she told me maybe I should go talk to my oncology nurse.
So off to the 3rd floor we went (my sister Claire was my chemo buddy du jour) where I paged my oncology nurse. She came out to the waiting room and I explained I needed to be cleared to get off “The List” that I wasn’t sure I was even on. I asked her if she could clear me. She looked at me and said “Me? I don’t even know what you are talking about. I need to talk to the doctor.” Off she went to find the oncologist. A bit later she came back and said you are on “The List” and will stay on “The List” until you have three days of no coughing or running nose.
Sigh…..Back to the 5th floor to the same check in person to tell her I am now on “The List.” It takes about a nanosecond to get on “The List” so I asked how long does it take to get off “The List” All four of the people working at check in drop their heads and shake them slowly, “It can take a month” one of them replied. A month! I am told I need to sit in Respiratory Isolation. Sigh….. So Claire and I sit in the “special” seats so I can hack and cough and blow my nose without infecting anyone.
When it is my turn for chemo, I am assigned to room 22. It is one with sliding glass doors. As soon as the doors are closed a big STOP sign is slapped on the front along with a green sheet of instructions on entering my room. These are essential precautions so the nurses don’t spread my germs to other patients. While I understand and appreciate these procedures, it does make one feel ever so slightly like a pariah.
On Friday, if I have stopped coughing and running, I can call my oncology nurse and ask to be taken off “The List.” If not, there I remain, to be put in isolation for another week (or month) until I can be removed from “The List.”
One of the rarer side effects of Taxol is “nails changing color or becoming brittle.” The oncology nurse told me that you could loose your nails with Taxol but not to worry about it unless they ooze. Well…..my poor baby toenails are not what they use to be. They have become the victims of Taxol. They have oozed.
I chewed ice during the A/C treatments to stave off mouth sores. I got mouth sores anyway but maybe they would have been worse without the ice. I have mouth sores now and am once again chewing ice during chemo. To help alleviate the nail issues, the chemo nurse decided I should try icing my feet while having chemo. The same principle applies to the toes as chewing ice does to the mouth.
It just so happens that biohazard bags are the perfect foot icing device. There is a zip lock compartment that holds the ice and an outer pocket that is perfect for your toes. So with ice on my toes and ice in my mouth and heated blankets on my body, I spent my infusion time cold and warm. As with my mouth, I am not sure how much it helps but am worried that if I don’t ice, things could be worse.