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!!!

Back from Dallas

Well, I’m cross-posting this from my CareFlash site (the private site I use to update folks about my cancer – you can join just by sending me your request in the comments of this blog) because it’s an update of the trip to Dallas AND because it deals with “control” something that I’ve had to let go of in my marriage. Seemed appropriate to add this posting to this blog as well. One thing I neglected to mention in this posting is how much I relied on Terry to make this decision. I walked a “fur piece” without him until he tearfully reminded me that he was here to support me if only I would lean on him. So many times I’ve cheated him out of being my number one supporter by taking off on my own. It’s unfair to him and leaves him feeling like nothing more than my personal assistant instead of my partner.

From CareFlash:

The problem with renal cell carcinoma is that there are no easy answers or remedies. Sometimes it just makes me feel like my head is going to explode. No wonder I was desperate for a miracle in Dallas. I was certain that the specialist in Dallas would look at my chart and say, “Well here’s the obvious treatment for you. Let’s get you started now!” But, of course, that’s not what happened. Instead, he recommended the same treatment as my primary oncologist – the treatment I initially turned down for fear that it would further damage the perforations in my intestines. That just didn’t seem like a miracle at all.

But maybe I don’t know what a miracle looks like and maybe this is one of those times when faith trumps research. That’s what Dr. D. helped me understand in one of his e-mails to me.

Experts say the hardest thing for you is losing control of your life, hence, most who treat you will involve you in the decision-making, especially when there is no clear best choice.

He knows me well and knows that control is important to me. Obviously, my oncologists understand that, too and that’s why they are willing to let me make decisions “when there is no clear best choice.” I rejected Dr. F’s (S&W)  recommendation of Avastin because of its potential impact on my intestines and he was willing to let me make that decision for myself. But it was the same prescription I got from Dr. H, the oncologist in Dallas. When I questioned his recommendation, he offered me a second option NOT because it was better or just as good, but because my concern about his first choice – my lack of faith in it – could render it more harmful than good for me. In other words, my attitude is the strongest determinant of a drug’s success or failure.

Dr. H. and Dr. F. both have a vast conscious and subconscious knowledge base, which you cannot possibly duplicate in your research, and that knowledge causes them to believe Avastin is probably a better choice for you.  

I thought, that Avastin couldn’t possibly be the answer since I hadn’t done any research on all of the other options. But Dr. D. told me that I need to let go of the need to “know it all” and have faith that God is guiding their subconscious knowledge base that causes them to believe in a particular treatment plan. I should believe in the wisdom of their subconscious knowledge base because armies of supporters have been praying that God will guide my doctors and give them wisdom. I could make those prayers meaningless if I ignore the recommendations that God leads them to make. Maybe doing God’s will means that I need to shut up and do as I’m told, to trust the doctors who are treating me. (Dr. D. said it much more eloquently than that.) He also reminded me that following orders doesn’t mean that I’m giving up all control.

You can still be in control by choosing their recommendation rather than trying to make the choice yourself.

So my trip to Dallas wasn’t what I expected. But Dr. D. helped me see this experience through a different lens and I now see that the trip was exactly what I needed. I’ve got another smart doctor on my side that we can call on. We’ll try Avastin for now. If it doesn’t work, it won’t be because I am apprehensive and concerned. Dr. H said that we have lots of options so he and my dear Dr. F. will have more treatment recommendations for me to choose. We’ll just keep fighting until we find something that will keep this cancer under control so I can go on living. My friends will keep praying for wisdom for my doctors and Dr. D. will keep reminding me to let God do his work.

___________________________

So here’s what I wrote on CareFlash to set the record straight about love, marriage and cancer:

As I re-read my last posting about control, I realized that I left out the most important lesson I’ve learned this past week. I forgot to mention that I learned that letting go of control and leaning on your husband is the best thing you can do for your marriage. My earlier post makes it sound like I learned my lessons mostly alone with a bit of a nudge from Dr. D. Truthfully, it was my dear sweet hubby who knocked some humility and good sense into me when he reminded me that I cheat him out of being my partner when I make my healthcare decisions alone.

He makes a great nursemaid and keeps me alive be hooking up my TPN and Saline every day. But he makes an even better husband when I let him. He gave me great peace by participating in my decision to get on Avastin (we start next Tuesday). My docs may have some subconscious understanding of the drug and what it might do to/for me so I trust their judgment. But my husband will be the one carrying me through the side effects so this is a decision I could never make without his support.

Forgive me, honey for neglecting that important part of the story and the important role that you play. You are the BFF that holds my hair back when it counts!

Odds and Ends

Big plans for July 5

Well, I’m pleased that I’ve arranged for an appointment at the new Baylor Charles A. Sammons Cancer Center in Dallas.

It looks spectacular! According to the description, it is 10-stories, 467,000 sq. feet and last year served 800 people in research trials. Also…

We offer more than 15 disease-specific support and educational groups and programs, making it one of the most comprehensive programs in the country-and we’ve build it all for you.

Does it sound weird to say that I’m looking forward to my doctor’s appointment on July 5? You should definitely take a few minutes to scope out the virtual tour. I know it will be 100+ degrees, but I’m still planning some time to experience the healing garden while I’m there. I understand that the chapel on the first floor is also a wonderful place of peace and tranquility. Let’s just hope that the doctors are as amazing as the new building.

For your prayer list

You have all been so generous with your prayers for me and I’m convinced that you’ve made a difference. I just want to give you a heads up that I know of another three women who are part of my Kettering Foundation network who are also going through chemo. I want to protect their privacy, but perhaps you could just say a little prayer for the KF Chemo Club. God knows who they are and that’s all that matters.

Playing for Change, and Love & Hope

When I first got sick, one of the first gifts I received was the documentary, “Playing for Change: Peace Through Music” from my friend, Ed Arnone. I’m sure by now you’ve all seen the viral video “Stand By Me” which “transformed Playing for Change from a small group of individuals into a global movement for peace and understanding. If not, I’ll just stick it in here, because it won’t hurt to watch it again even though that’s not the point of this post. Click the play button and get your butt up and dance! You’ll feel so much better and it will give your co-workers a chuckle.

Well, the other night, I was having one of my restless fits and could not get to sleep so I got up and played a new game I’m calling “Random Lullaby”. When I can’t sleep, I’ll pull out my iPhone and play a couple of songs at random until I start to feel sleepy. I hit the jackpot with two numbers – the documentary piece I got from Ed and another piece I didn’t know and don’t know how I acquired it. Both turned out to be perfect not because the music was much of a lullaby, but because the words were perfectly suited for my circumstance. I danced my way back to bed eager to get a good night’s sleep because both songs inspired me.

Here’s the youtube version of the Playing for Change version, “A Better Man” featuring Keb’Mo’.

Just in case you missed the lyrics, here they are:

Sittin’ here in my problem
What am I gonna do now
Am I gonna make it
Someway, somehow

Maybe I’m not supposed to know
Maybe I’m supposed to cry
And if nobody ever knows
The way I feel
It’s all right
And it’ll be ok

(Chorus:)
I’m gonna make my world a better place
I’m gonna keep that smile on my face
I’m gonna teach myself how to understand
I’m gonna make myself a better man

Climbing out of the window
Climbing up the wall
Is anybody gonna save me
Or are they gonna let me fall
Well I don’t really wanna know
I´ll just hold on the best I can
And if I fall down
I´ll just get back up
It’ll be alright
It’ll be ok

(Chorus 2x)

Maybe I’m not supposed to know
Maybe I’m supposed to cry
And if nobody ever knows
The way I feel
That’s all right
It’ll be ok

(Chorus 2x)

The second piece was Love and Hope by Ozomatli. I have no idea how this piece landed in my iTunes, but I’m delighted it did. I’ll post the youtube version which is nothing to look at, but here are the words to the chorus so you can jump in and sing along. By now you should have your co-worker’s attention so invite them to sing along.

Chorus:

Just raise your head up and stand up, no fear in your eyes.
Tell me love and hope never die.
So raise your head up and stand up, no reason to cry.
‘Cause your heart and soul will survive.

Cancer throws us for a loop – God Blesses us again!

[Cross posted with minor edits from the private web site for Taylor Willingham at CareFlash.com.]

Cancer is a fickle disease. Apparently, it likes to tease you. One week the news is good, everything looks positive, the tumors are shrinking, your energy is good, and everyone marvels at how healthy you look. Then you wake up one morning with serious pains in your abdomen and back. You go visit your friends in ER- including the guy in the clown scrubs who once again screws up the IV he insists on inserting in the back of my hand in the most inconvenient location! Obviously he’ll never learn so why don’t I learn and refuse to let him touch me?! Then you spend a couple of days in the hospital getting tests that tell you just how quickly good news turns bad.

At least that’s what cancer has done to me this past month.

I got up on Thursday the 9th in great spirits and health. At 8:30 a.m. I was at Johnny’s Bar-be-que running the Salado Education Foundation meeting (I’m President) for the first time in five months. I came home at 9:30 and got ready for a visit from Vicki (the Austin Vicki I haven’t seen in months!) when I started feeling droopy. Poor Vicki. She arrived just in time to help us throw my medicines and and few personal objects together and send me off to the ER. They kept me overnight which meant that Terry had to leave work, throw a few things together, and come stay the night. Mom and Dad were with me the whole time, too. Somehow God gives them the energy it takes to be my caregivers. Its amazing to me.

My oncologist was in Rome on holiday. (Images of a romantic venture to Italy danced through my dreams in the hospital and sustained me during my stay – much better than his reality. I learned later that he was there as a chaperone for a group of high schoolers!) One thing I’ve learned through this experience is how important it is to have medical staff you trust. You may be the patient who is in control and is making decisions about your health care, but you have to feel like you have doctors who understand your situation, care about your well-being, and are willing to tell you the truth even when it’s hard to take. I was blessed with two outstanding oncologists who filled in during his absence. Again, God was watching over me.

I spent four evenings in the hospital and during that time, they took another picture of my innerds (CTScan). Contrary to the CT Scan in May, this picture looked more like my scan in March with large cancer globs on my liver – the cause of my back and abdomen pain. We can only conclude that the current chemo regimen is not working. I had just completed my two weeks of Gemzar and was still carrying my 5FU bag around pending one more week. I left the hospital on Monday, took another treatment of Gemzar on Tuesday and then saw my regular oncologist (mostly recovered from his Roman Holiday!) on Thursday. I still got my hug and kiss on the forehead, but this time it was for comfort, not for celebration.

Still, he’s one tough MD and he’s willing to fight as hard as his patient so we’re going back to the drawing board. Actually, you might say we’re getting a bigger drawing board because we’re on a mission to research any and all possibilities. His first recommendation was Avastin. This has shown promise in Renal Cell Carcinoma in conjunction with Interferon Alfa which boosts the immune system. Unfortunately, it can also cause gastrointestinal perforations, sometimes fatal, in a small number of patients. Normally, I’d ignore such a small danger, but I already have perforations severe enough that I’ve lost the ability to eat food and am on a full fourteen hour IV regimen of TPN for my nutrition. If I ever hope to repair my perforated colon and intestines, it seems like I’d best not do anything likely to exacerbate the problem. Even though I fear that it looks like I’m wimping out, I know that there are other options out there. My dear husband assured me that no one will think less of me for turning down an option that doesn’t feel right. So here’s my plan…

I’ve contacted a researcher at Baylor who was recommended to me by the Director – Office of Clinical Ethics and Palliative Care Baylor Health Care System, someone who attended the AmericaSpeaks Our Budget; Our Economy project in Dallas. I was the Site Manager for Dallas last July and Dr. Fine attended by invitation through my friend Chip Fagadau. Dr. Fine was so impressed by the process that we began an e-mail exchange on the application of deliberation to public policy issues related to end of life decisions – a topic I’ve tackled using the NIF issue books. How ironic that our conversation eventually became very personal as I shared my diagnosis with him! He suggested an oncologist in Dallas who focuses on Renal Cell Carcinoma. Hint, hint, Dallas friends…Clear out the spare bedroom, I’ll be heading your way soon. (Hey Lukensmeyer, here’s a story for the AmericaSpeaks brochure you probably never expected! Dr. Mathews, once again Kettering and NIF are changing my life – maybe even saving it. Who would have guessed?)

Yesterday I used every last bit of energy to make calls and do research. I’m lining up my options, anticipating my insurance needs, and wearing out the keys on my computer. (Oh wait, they’re already worn. Brent, can you help me get a new set?)

In other words, I’m still fighting with every tool I have at my disposal. But I’m also recognizing that I ‘m still trying to do too much on my own and that I need to lean on my husband more. He’s always there and he’s fantastic at anticipating my needs – greeting me with a loaded syringe of morphine just as I start to get up from my chair to get some pain killer, refilling my ice when I’m down to slivers, gently folding back the sheets to welcome me to our comfy bed at night. But I need to do a better job of laying out options for him and asking for his advice. It’s just hard to do when you’ve been single for 36 years.

One way I’m really relying on him these days is for comfort. I’m crying because it feels good to get it out of my system and I’m using every shoulder available to me physically and emotionally. Today, we stopped by the garage sale of the church we just joined four weeks ago and all sales practically came to a stop as I was greeted with love and prayers of people who barely know me. Terry and I have wanted a church home since we got married and I feel like we found what we were looking for in the Salado United Methodist Church. This will strengthen our relationship with each other and with God during this dark time.

God blesses me again!

BTW, Mom told me I should be positive in my posts. I told her I’d rather be authentic. So the news ain’t great, but it’s not enough to end the fight. I’m still in there slugging away because I know I’ve got a team of you standing in my corner lending your prayers and love. Oh what blessings you all are!