Taylor’s 54th Birthday Pt. 1

I am so unforgivably behind in posting updates here. I have all sorts of weak excuses. I’m still getting accustomed to my new home. I’ve been busy writing the next Great American Novel. My computer crashed. My dog ate my computer. But the truth is…I’ve just been flat out tired. I just needed to shut down for a few days. I’ll fill you in on the last two weeks in a future posting, but for now, I want to share a happy day with you – my Birthday!

First of all – thanks to all of you for your warm wishes on August 17. My facebook overflowed, my e-mail was heaps of kind greetings, and I even had stacks of handwritten cards – you remember the kind. They have return addresses, postage stamps. What a treat it was to hear from so many of you!

But there was also a real party. My mom took over the visiting room and decorated it all in yellow. It was so bright and festive. She had special t-shirts made for our family, but there’s a back story you have to know for the t-shirt story to be meaningful. One part is obvious-the bright orange ribbon (orange for kidney cancer) with the silver angel. But the writing will take some explaining. When I was in Jr. High, I sang in a church musical called Alive. The chorus was “He is Alive, He is Alive, He is Alive”. The fun part was that you emphasized a different syllable every time so mom printed those syllables in bold and used the pronoun “SHE”. (My shirt read “I”) Sing along with me:

“She is aLIVE”
“She is ALIVE”
“She IS Alive”

Isn’t this a good looking group?

In my next posting, I’ll share some of the fun presents I received for my 54th.

But for now, Marty McFly is risking his life to retrieve the Almanac that fell into the hands of the class bully who used the Almanac’s statistics to gamble his way to fortune and turned the town into a den of inequity. (You HAVE seen Back to the Future, haven’t you?)

Actually, I won’t be much help as my drugs are starting to kick in. That’s another post, too and a partial explanation for my lack of communication. Thanks for hanging with me and for your continued prayers. I love you all. Keep up the faith. I need your strength.

God Bless,

Taylor

[NOTE: This post was originally on CareFlash, a private website where people with serious illnesses can correspond via private blogs with their network. If you would like to be part of my network, send me an e-mail:  taylor [at] austin-pacific [dot] com

Settling in for the long haul

Bit by bit, I am starting to populate the shelves at the Continued Care Facility with my own stuff. It’s mostly stuff to read, notebooks of random thoughts, medical odds and ends, a few froo-froo items and of course…the technology! I’m certainly the only room in the building with a wireless printer! We are doing all we can to make me feel at home. Mom even brought me a t-shirt and shorts so I get a reprieve from the nasty, faded hospital gowns I’ve been wearing for three weeks.

It’s a good thing because I’m going to need a lot of help to stay sane over the next few weeks. It looks like I will be here for at least six weeks. Whatever is taking over my liver seems determined. We don’t expect it to budge for some time. The bacteria in my blood is fairly easy to get, but the the three in my liver (I think it’s 3; I’ve lost count) are vengeful and one (VRSE) is particularly nasty. My facts may be a bit off here. It’s hard to keep track when your daily doctor meeting starts of with, “well we’ve found something else…”. But I think we’re through discovering new bacteria.

SO, today my body decided to try something different to make life interesting. No new bacteria today. Instead, my right hip has decided to quit working. I’m sure it is nerve damage related to the displaced liver and abscess. I’m able to walk in a very contorted manner clutching my Christmas Tree – the pole of drugs I take for a walk to keep up my strength – at least I did.

I don’t really walk, I just sort of jerk and sway. If I put enough jerk into the sway, I go forward. Too little jerk and my right knee twists inward and mashes my toe into the ground. If it doesn’t result in excruciating pain, I sort of resemble young Forrest Gump teaching a hot new performer a few dance moves. At one point this afternoon, I felt like I could have gotten on a pretty impressive “Forrest Gump” move for Elvis Presley back at the old boarding house. (If you don’t know what I’m talking about, rent Forrest Gump this weekend.)

We did an x-ray of my hip, but didn’t find anything. Tomorrow they’ll hit me with another CT Scan. It’s on the first floor so that will be a big field trip for me!

I’m trying to remain strong, but I also promised that I would be authentic so I have to honestly say that being bed-ridden sucks. Objects just out of reach, entice me and tease me. I don’t want the magazine on my nightstand that I could easily retrieve. I want the newspaper on the shelf right where my fingers can flutter the page, but not close enough to get my thumb around the fold. I don’t know if I am going to feel like doing my nails later, but I want the emery board and lotion here right now just in case. Please don’t make me ask for it later. Fill my cup full of ice, not halfway. Otherwise, I’ll be waking you in a few minutes for more. I can’t bear that I constantly need someone to refill me when I am parched.

This is not the first time that I have been forced to learn to let go and let others do for me. If I am not careful, these feelings of helplessness will overtake me. I need your help to keep that from happening!

Setback #423

On Friday July 29 I had a CT scan and was immediately sent to ER for admission because of an abscess in my gut. We discovered two bacteria including one in my PIC line which meant that I had to have it removed and reinstalled. The treatment is lengthy and labor intensive so on Friday August 5, they moved me to Continued Care for a lengthy stay. Details in previous post.

I’ve spent the last two days slowly moving into my new digs. It’s really complicated to try to imagine what items you need from home, where they are and how to describe them to your family so anxious to retrieve your creature comforts from home. When I requested fingernail polish remover, my dear sweet husband brought the entire cosmetic bag. I have enough supplies to open a salon, but alas, the polish remover bottle is too large for the bag so it sits at home under the bathroom sink.

But that’s not the bad news or the setback of the day…

Today they discovered a third bacteria that is, unfortunately, not treated by the antibiotics I am currently on. I don’t get credit for good behavior so I’m starting over with a new antibiotic. They have changed my treatment plan. I’ll find out on Wednesday in my meeting with Infectious Disease how long I will have to be here, but it could be six weeks or longer. The bad part is that I can’t do chemo right now so my cancer battle is on hold. I also have an obnoxious sign on my door that says “Isolation” (like most of the rooms on this floor) so everyone who comes to visit gets to wear a plastic gown. (We have color options and have decided that yellow is definitely not my husband’s color. If you look good in blue, come on down.)

I guess that the good news is that I have more time for reading, reflecting and writing that book that mysteriously ended up on my “to do” list.

I’ll keep you posted when I hear more!

What a week it’s been!

On July 29 I was sitting in the ER waiting for admission to the hospital following the revelation of a liver abscess in the CT Scan. What a week it has been!

• We have determined that I have two different types of infections (in my blood and in the cavity left open by the removal of my kidney).
• I’ve had surgery to install a drain (a six-inch tube) in my liver which I managed to completely pull out in the middle of the night.
• I had to have my pic line removed from my right arm in case it contains bacteria from my blood. The Pic line is a line that goes through my vein to the superior vena cava to deliver my nutrition (TPN) and chemo, saline, antibiotics and drugs.
• I had a new Pic line installed in my left arm.
• I had a second surgery to re-install the drain tube.
• I spent 90 minutes in the MRI Tube (who can top that?!)
• I took an ambulance ride to new facility

So after all of that…

On Friday August 5 they moved me  to another facility in Temple (by ambulance-what a hoot!) it’s a Continuing Care facility  where I can get the same care without taking up hospital bed. I’ll need to be here for 2-6 weeks – still waiting for docs to decide which anti-biotics, etc. that will impact length of stay. I’ll also get physical therapy to build up strength. I have a pca pump which allows me to control my own pain injections. But the big reason for my move is that my current regimen is too complicated and labor intensive for Terry and mom-and impractical for my home health care nurse so this is the best way to care for me.

My dear oncologist, Dr. Frankel stopped by and is on board. His research facility is close by so I’ll likely have more surprise visits from him. I really feel this move was collaboratively decided by team including: interventional radiology who installed my Pic lines and liver drain that will take about two weeks to drain, the hospital pharmacist who is coordinating type of drugs and specific ways to make them work in my condition, infectious disease the docs overseeing my antibiotic strategy, oncology/hematology, Dietition that monitors my blood sugar because I get spikes from tpn and periodically take insulin to bring it down, and nurses who recommended giving me control over my pain meds. as you can see, i have an amazing team, but ultimately all decisions are up to me. unlike last February when I had control, but lacked information. this time I have docs who have been thorough, are obviously in conversation with each other, are knowledgable, and really listen to me!

I have a large room with a view so I’ll read and write a lot. I’m looking forward to it.  Dad has already set up the wireless. he’s too cool! So I’m ready to get some reading, resting and writing done. Of course I’d love to read updates from you about how life is on the outside. I’ve got lots of messages to respond to, but I always enjoy hearing from you. Thanks to all of you for you prayers and for your loving wishes.

I love you all!!!