Saturday, June 28, 2008

The Accidental Astronaut

Pun fully intended above.

Yesterday was a milestone; one I didn't think I would reach for a bit nor was I fully prepared for it. I'm off chemo.

Well sort of, so before you start whooping it up there is a catch. Lemme rewind...

It had been a few weeks since I'd met with Dr. Lee and we'd last talked about possibly switching me to oral chemo (my old friend Xeloda) to finish things off. I'd made noise then about the neuropathy and how my fingertips were numbing and both my feet were constantly freezing numb. We agreed to go two more rounds. Round nine was on when Brie passed and only Grace carried me through that without days of ill effect. Round ten was last week and pounded me harder than ever before. Compounding that was Jody needed to be away for the week for training so I was on my own with the dogs to care for. I was sick for five days straight until Thursday this week I finally got some relief.

Of course, that was the day Dad was scheduled to go in for his dialysis catherter surgery which had been worrying me all week too. I can put on a good show for "routine" surgeries but it doesn't mean I'm not still worried. Thankfully Dad's procedure went just fine and, though he's got some expected abdominal pain, he was able to get up and down under his own steam that afternoon. I'm hoping to visit he and Mom today now that Jody is home too.

Thursday evening I was glad I'd been able to go with Mom to the hospital and I was feeling much better than I had all week. The boys had been very depressed all week with no Jody around so I asked them if they wanted to go for a drive. They perked up at that as did I and we went out for an easy loop around 108 down to 32 and back up 95 to home. I noticed Bailey still nursing and licking at one of his feet when we got back and found it was bleeding. (Yes, there are bloodstains in my car now too.)

It was too late for the regular vet so I called the overnight place. The nurse there encouraged me to keep an eye on him and bring him in if it got worse. The bleeding had largely stopped and Bailey was curled up asleep by the time I got off the phone. In the morning, I made an appointment to have him checked out... the poor guy keeps hurting both of his hind feet but this was the first time anything had bled.

But that had to be after I'd visit Dr. Lee again...

I came in with only two items on my agenda; I needed two more packets of the lovely anti-nausea pills that go with each chemo drip and can we PLEASE talk about stopping the oxiliplatin because my fingers and feet are now blocks of ice.

She asked me how things were going and I relayed my bullets to her. She asked if the anxiety was still there and I had to admit it was but the little ativan pills helped and I planned on taking one next week to help psych me up for round eleven. All of this must have tipped the scales because she suggested enough had been enough... but...

She began to tell me about a drug called Avastin that I'd be switching too along with Xeloda to polish off the full chemotherapy treatment. I've already been getting Avastin as part of my cocktail; it is the piece that interrupts the signaling of cancer cells to blood vessel cells to make new blood vessels. We'll finish off the poison that kills the cancer cells (and others) and stop the little knives from flying around bursting capilaries that slows new cell growth, but we have to keep any living cells left from growing.

This started computing in my brain and I asked the obvious question of how long this would last. I dod not remember learning about any sort of maintenance therapy only monitoring and possibly needing more attention once this was all over with. Getting to "over with" has become one of the last few things I've been trying to reach... and all this sounded like was MORE.

I held it together until I left and had a good cry in the car. Jody was in class, Mom was home caring for Dad, Bailey was hurt and needed me to get him to the vet, and I had already postponed visiting with Alex because of Bailey. I felt like I'd been just barely climbing mountains and now I had to fly to the Moon. I just prayed.

I got some peace and a little perspective in response and I was thankful. Yes I'll still be going in for regular drips every other week but I won't be taking home that annoying little pump overnight. (I can still hear that thing and it makes me feel sick.) This Avastin stuff does have some side effects but nothing like the sapping sickness of the IV chemo, flourouroouroro-whatzit. I get a month off before we start this phase and there will be a third PET/CT scan in there to see how things have changed since the reversal surgery. This may, for all practical reasons, mean my last batch of really sick days just passed me by.

And yeah, that brings tears to my eyes but this morning they are happy ones. :')

Wednesday, June 11, 2008

What a week...

I tried writing Wednesday morning because I needed an outlet. I wound up saving the draft and not posting and I'm glad I did.

I was angry.

Oh yeah was I angry. A friend had died in, what I felt, was the most unfair and cruel circumstance. I'd railed and cried and wished it could have been me instead. I've had a good life so far and hers had hardly started. I was more angry over this than I was at any of the low points I've found myself trying to get through colon cancer. It simply wasn't fair or right and if I believe God made me in His image then my sense of fairness and rightness must have come from Him, right?

THIS DID NOT ADD UP. And it was making me furious.

That draft post was full of it. I admit it now because, honestly, it's the right thing to do. I am no saint and the truth, the whole truth, ought to be out there for you guys to see. Yes, I believe, but that does not make me more than human.

I was dreading the memorial service Wednesday afternoon. When I went in last Friday to return the chemo pump, I half begged Dr. Lee to prescribe me something for anxiety; she gave me ativan. It had worked so well at calming me down with the last two of those towering chemo drips that something at home would really be nice, especially with such heartbreaking news to have received the day before. But it felt like cheating; to have a little pill that would just chill me out instead of suffer all the hurt I was feeling for Brie. I haven't taken one again since the first one.

I downloaded a carefully metered amount of this on Jody. She lovingly reminded me that yeah, we have faith in God's plan but that He's not the only force at work. I grabbed onto that and reiterated my deepest hope that on some level Brie's doctors were able to learn something that would help save another person. Until then, it was the only good thing I could even remotely find about this whole mess.

We were going early to allow Jody time to help with the flower arrangements she'd volunteered to captain. That left me with time to call my Dad and talk a little. Brie's brother Alex found me too and he was doing alright. I told him he was welcome to visit when he felt up for it and that I'd bought the Lego Indiana Jones game that we could play two-player.

Even from a distance, Holly had made it very clear she wanted the service to be a celebration of Brie's life. Given my emotional state at the time I was struggling with this. The service was overwhelming and there were some moments that really touched me.

Where I had been so amazed at the miracle of Brie being put into the hands of specialists both in Ireland and here at home, it was one of the nurses at Hopkins Childrens Center who may have been the real miracle. You see, not only was she a nurse at the hospital but she was also a member of their church and had been Brie's Bible study leader just a few months before. A friend and a caregiver and a mentor, right there for her. It was this young lady whom reminded all us that Brie had framed out peace and love as the most important things to her.

Alex had written a little about his sister but it was the story his pastor shared about a walk they'd been on a few days earlier that struck me. The pastor admitted he stumbled into the question that, at times like these, really doesn't have an answer. He said he'd asked Alex, "Are you okay?" He said Alex paused at this and answered honestly that no, he wasn't. Not yet anyway, but Brie was and that would help him be okay soon.

Why I couldn't see this for myself became clear just a bit later.

As the service concluded, the pastor told us another story of how Brie had picked a verse from her Bible with her Dad and had pinned it to the wall in her hospital room. It was 2 Corinthians 5:7 which reads, "For we walk by faith and not by sight."

Like a curtain being pulled back I realized that's been my problem most lately. It's also the reason I needed to write this and be honest with you who may be reading. I've not been walking by my faith lately. I've been right back to handling all of this stuff on my own and praying only when it hurt instead of when I was fine... which I'd complacently chalked up to my own good work. Being human can bite you in the butt sometimes. No pun intended.

The pastor concluded by affirming just as Holly had made plain that Brie would not want to be mourned in sorrow. Paraphrasing, she would have told us that she wanted to be missed a little but that we should also make peace and love important in our lives.

Both Brie and Alex have been such wonderful examples to me. Though I am still sad, I am not angry any more. I know again I need to really walk by my faith. And I know that Brie is okay now and that will help me be okay too.

Thursday, June 5, 2008

please pray for Holly, Alex, and Mark

I have to post a very sad update. Brie has passed away. I do not know the details and right now my only hope is that she was not in any pain. Those hurting most are her parents, Holly and Mark, and her brother, Alex. Please pray for them.

[old post]
I've posted before that she'd fallen ill on a vacation to Ireland and was found to have contracted an acute onset of apalastic anemia; in short, her bone marrow has ceased producing blood cells of all types. Most recently, she has been so unstable that she had to be isolated in the pediatric intensive care unit at Johns Hopkins Childrens Center fighting not only a short balance of white cells, but doing so against a reported three different types of bacteria floating rampant through her little 12 year old self... oh, and running at 100-degree plus fever. For a while, she was not able to breathe unassisted though it sounds today as that has been mitigated. I've heard she was awake last night and asking for Holly, her mom.

Holly needs our most sincere prayers as well. She's been painted into a corner rather quickly with Brie being sick, not being able to work regular hours, and trying to maintain some sanity in Alex's life; Brie's twin brother. I worry for both of them so much so that I cry wanting to do more but being half dead myself. It's crushing me that I can't go to visit her in the state I'm in. I can forget the pain, but I can't change the fact that every pore in my skin is bubbling with residual chemo that could seriously complicate matters for anyone around me whom is sick. If only Brie were at least on a path through and out of this mess, we could all breathe just a little easier and coping with the day to day stuff wouldn't be so bad.

Holly's parents are en route and I've heard Alex has been able or will soon be able to visit too. What Brie needs most is healing. It's what we all need, really. So please, please lift Brie up today and pray for her today.

Monday, June 2, 2008

taking back the blog

I made an honest mistake. I thought it would be helpful to someone else out there who may be dealing with this same cancer to see what I've been through. When the invitation came to join a blogger community that could be searched, I thought I'd join and get a little exposure; maybe help someone out. That's me.

But VerveEarth took over and I lost the ability to post. Until this gets fixed, I won't be using the service. One lengthy post at a particularly low point on my trek got lost and isn't even showing up as posted or draft saved anywhere. :(

People have emailed and asked in passing how it's going. To be honest, it's been hurting. A lot. I keep getting teased with days where I feel fantastic only to be sobbing a few hours later. This is the part of the rollercoaster I do not like... the wavy part. Give me the big drop I can see coming, any day. Just let me have a little time to prepare myself for what's next, please.

I hit a 10 on the pain scale earlier this week; shivering in shock and crying. :'( That allowed the insane idea of taking a dose of oxycodone sound reasonable. Trouble was, it didn't kick in any faster than the pain subsided on its own but I still got itchy all over and short tempered anyway. I need to flush the rest of those pills down the toilet.

I have a good idea of what and why there has been so much pain lately. And I am trying to execute a plan to help smooth things out. I am absolutely convinced the pain is an anal fissure that has not been able to heal on its own for a number of factors including being back on the chemo. I know my immune system is getting beat down with each hit so even just being careful with my diet and drinking LOTS of water is only going to do so much. I'm just hoping and praying I can keep up the fluid regimen and possibly keep any leftover chemo from concentrating on me as it passes through and knocking me down when I'm already weak.

I look at the calendar a lot lately and the weeks are counting down; just seven left now and four more rounds. Round nine starts day after tomorrow. Even though it's so close to the end, each one just towers over me blocking out anything I'm looking forward to and I lose it.

I do not want to go through this any more. :'(

But I don't really have a choice. :'(