Tuesday, December 30, 2008

DAY 2: The never-ending epidural...






(Above are some great cancer goodies I have received thus far as gifts!)

Despite having 10 steriod pills in the evening, I slept fairly well last night! With the exception of nurse visits to take vitals at 3:45am and to change out the IV bags at 4:30am, a peaceful rest was the prevailing tone. The constant click of the infusion pump right next to my head sounds like a percolating rhythmic coffemaker or the cocking of a rifle. It's easy to put out of my mind when it's dark and queit.

Today started with a nice hospital room-service breakfast, courtesy my robust petite. I felt good. No nausea and plenty of lucidity. The food gave enough energy to walk 13 laps around the floor. As I am dragging my infusion pumo along with me, it's slow-and-go at best. The highlight is marking up on a hallway whiteboard another hash mark with each additional lap accomplished. My goal for today was 21 laps (one mile).

In addition, this morning included a melange of Pepcid, Zofran, Allopurinol, and Colaise as prechemo to my 9am round of cytoxan. I get cytoxan over three house, once every twelve hours, for six doses.

I was able to get a few minutes untethered from my infustion pump, who I affectionaly labeled 'TOBAC' (The Old Ball And Chain), who we can simply call 'Tobie' going forward. This meant I could get a shower! YEAH! What a treat! While I was only unhooked from Tobie for about 30 mins, it was a nice element of 'freedom'. They redid the dressing for my power-port so I got to see under the hood for a minute. Wait to you see this thing (see pic below). I now capable of handling injections at up 300psi! What?!? While free, I even snuck in a few hallway laps at a much more brisk pace. I'm up to 18 for the day. May work to get 3more by bedtime. I'm up to 18, so I need to get a few more before bed time.


The PharmD and oncologist came in shortly after lunch and told me I was to get a drug called Methotrexate today, which I had previously thought was only for the B-arm of the Chemo A/B block. Nope. It is a spinal tap where they spidurally insert a needle into the spinal chord to pull out about 12ml of spinal fluid (to test for center nervous system involvement, CNS), as well as leave room to inject 12ml of Methotrexate without over-pressurizing the spinal column.

They had me lift up my shirt and sit on the side of the bed, slumping over to expose and open up my lumbar vertebrae. They felt with their fingers at each disc, trying to find a good candidate. A prick and burn of litocaine was given to slightly numb the area, but they cannon fully numb the entrance to the spinal chord itself. Something wasn't working. They kept asking me to lean over further, or sit up straighter. The goal is to get the tip of the epidural needle into the right place, so that spainal fluid will flow out. After 4 or 5 fruitless pricks into this disc area, we weren't getting anywhere. So they called in a back up. This next nurse decided to try a disc two verterbrae higher. Rinse and repeat. Ouch all over again. After three or four pricks in that geography, some spinal fluid started to leak out, but then turned to blood, which made us call off that effort. It was time to give up for the moment. About 30 mins later, the oncologists's fellow came in and was confident she'd be able to make things happen. We would just go ahead and try the third disc area -- why not! This lady was much more aggressive: she told me to lie on my side and bring my knees up to my chest. She just stuck needles in my spine until I winced in pain. At one point, the needle hit a nerve and shot lightning all the way down my left leg, which numbed it for a good 20 mins. Surely this is not routine! After gritting my teeth a couple more times, we got it! She let 12ml of clear spinal fluid leak out (which will be tested in the lab for cancerous involvement), and over a 5 minute peoiod then injected 12ml of the Mehtotrexate chemo back into the spinal column. My lower back literally looks like a pin cushion, I am told. I feel like an unsuspecting middle schooler who managed to have a sign that read "dart board" taped to his back for a long unfortunate afternoon. The oncologist said that if we have have this much trouble on my next attempt this week, we will negotiate the possibility of implanting a resevoir in my brain, similar to the port, where they can easily draw spinal and brain fluid for testing and to inject the Methotrexate there. We'll see what that involves. Clearly greater risks and benefits would have to be considered. Not too hot on the concept, just yet. Below is a photo of the failed attempts in one of the three areas.


After the the 'back attack', it was time to tackle my first infusion of Rituxan, which notoriously causes an allergic reaction upon initial exposure. Being the only new drug introduced in the last 10 years that meaninfully impacts Lymphoma outcomes, it is critical that I be able to withstand the administration at any cost. After Benadryl and Tylenol as pre-chemo, I starting getting the first Rituxan drips. My resting heart rate was 108 bpm. I saw it beating through my shirt. By the grace of God, we had no complications! They started me at a very low rate of 50mm/hr, and were able to step it up to 100, 200, and then 350ml/hr over the 4-hour process. We just heard the 'beep-beep' from the pump, meaning that the large 800ml bag of Rituxan is empty and a very meaningful milestone has been passed! YES!

I have been drinking copious amounts water all day (about 5-6 bottles and counting). The more I keep hydrated, the less likely I'll suffer any liver, kidney, or bladder damage. To put it in perspective, I have urinated 7,800ml thus far today (and rising). I seem to fill up each jug by the toilet constantly -- I'm sure they just loooove me. Hard to think that I will actually excrete out this cancer. Putrid, yet so simple and beaufiful.

Now I'm getting pre-chemo for my 9:30pm round of Cytoxan (this will be my third dose since I started). I'm basically a pro by now, righ??

I received a daily devotional book from my mother for Christmas and today's entry was right on time, so I thought I'd share it with you:

"I am leading you along a path that is uniquely right for you. The closer to Me you grow, the more fully you become your true self --- the one I designed you to be. Because you are one of a kind, the path you are travelling with me diverges increasingly from that of other people. However, in My mysterious wisdom and ways, I enable you to follow this solitary path while staying in close contact with others. In fact, the more completely you devote yourself to Me, the more freely you can love people. Marvel at the beauty of a life intertwined with My Presense. Rejoice as we journey together in intimate communion. Enjoy the adventure of finding yourself through losing yourself in Me."

While I do truly feel like this specific journey is uniquely my own, I am enjoying a close companionship with others that gives me courage and boldness to push ahead. I guess this is a another manifestation of hands and fee of the true 'body of Christ'. The paramount command to love one another as yourself sounds simple and benign at first (borderline warm and fuzzy), but I see it as one of the most challenging and vulnerable acts we, as humans, can endeavor upon. By loving another selflessly, we are implicitly opening ourselves up to the very real possiblity of unrequited love. Absolutely nothing coming back to us. That rejection is felt at the deepest core of our being. So loving another genuinely as much as we love ourselves (we love ourselves to no end), it a high calling and one to reflect upon.

I am thankful that I am truly loved unconditionally by my Creator, as well as so many friends around me. I yearn to offer true love and friendship in return.

Rest well. Tomorrow is Day 3 and life is wonderful.

13 comments:

heather said...

Stuart-
You are amazing! I am a friend of your mother's and have been reading your blog since the beginning. I wish you the very best! I just wanted to send you a note. You have another friend. My prayers are with you and your family,
Heather

Blog Strong said...

Stuart,

I'm glad to hear your first couple days went well. I'm also relieved to hear you responded well to the Rituxin. I've heard it may well be a miracle drug -- the two people I know who have had Lymphoma received Rituxin and are today happy and cancer-free.

My girlfriend is currently reading your wife's blog and tells me you never used to take any Meds... Me Too! What are the chances. In my life I may have taken half a bottle of pills before this treatment. Now it seems I take that every day.

All right, hang in there, be strong, think nothing but good thoughts, and go after the cancer!

-Sam

Anonymous said...

Hey Stuart-

I'm Sam's (BlogStrong's) girlfriend. He's been talking about your blog and your experiences so I decided I'd check it out. You're a great writer and it's good to hear your body is handling things well. I know Sam enjoys reading your posts as well. It's great to stay updated on others' experiences to help us through our own. Thanks for writing!

Katie

Myrna said...

From a friend-of-a-friend-of-a-friend, thank you and God bless you. Many people are praying for you and I must say that your willingness to open yourself up here is both amazing and inspiring to me. Your sense of humor and honesty and strength are gifts. God gave you everything you need to fight this.

Jo said...

Our family is keeping you in our prayers.

Kelle Ortiz said...

ok, so when I am getting my epidural in 2 weeks, I will think of you and this story and dare myself not to mouth one complaint. I can't even imagine. However, I did have that electric shock happen to my left leg with Xavier. Scared the crap out of me.
Shane and I pray for you at least 10 times a day. You are always on our mind. God is loving and faithful.

Acacia Leigh said...

Wow. Just inspiring to read. Yesterday I was telling my almost four year old your story (she asked what I was reading...) and we sat down and prayed our hearts out for you together. It was an amazing experience that brought us closer together and closer to God. She even prayed for you on her own last night before bed. All that being said, I am so sorry for what you're going through, but your testimony is already doing great works for Him. Imaging how many more people will come to know Him when you beat this! We are thinking about you often and sending a lot of prayers your way. God bless you and Candace.

Kacie

Andy Rocha said...

Dude, when can we come see you? I want to race you for those 21 laps!!

Unknown said...

Hey Stuart and Candace, Andy and I pray for you two every day!!! Reading your blog brings back memories for me. When I left the hospital I looked like a junkie, and I still have a small vampire bite scar on my neck where a tube was sewed into me. Just don't think about it too much. It's so good to hear that you are feeling well. God brings such peace through these things doesn't he. Love,

Anonymous said...

Stuart,

God bless you. God is all over you and it's evident. I am friends with your sister Stephanie. We are praying for you as you journey through this process. God is using you in a mighty way. Be still and know.

Sincerely,
Miranda Allen

Martha said...

Stuart and Candace,
Now you know what women go through when they have epidurals before giving birth to their babies! You both are so brave and inspiring and I think of you all through the day and Susan and Steve as well. May you have a comfy evening to welcome the new year tonight.

ReichT said...

Hey Stuart,

Unbelievable! I'm praying for you and Candace.

Todd

MITRA F said...

hi stuart, my name is mitra and i am your moms dental hygienest , i was touched by your story and i admire your strength , i wish you the best and i will pray for you every day god bless