Nov 06 2009
Thank You, And The Best Plan: UPDATE
Thanks to all of you wonderful people for asking questions. Something similar is happening in my email queue with my priests, deacons, and brothers and sisters at Holy Trinity. I’m “cognitively challenged” by the cancer and the narcotics (we ain’t talkin Tylenol #3 here, folks), and answering individual questions is hard. What I’m doing with the folks at church is giving periodic updates, and as additional questions arise, addressing them when I can (I don’t always have an answer).
Today is the “official release” of the biopsy (sounds like a software version, Win7 is coming out today!) The oncologist was here yesterday, though, and gave me the 2-hr-early release version. lung cancer, and the not so good news, non-small cell lung cancer. No, I had no idea what that meant either.
There are four (I believe) types of lung cancer. I have the major type that metathesizes and invades bone, and does not particularly react to chemo. The “it’s all about maintenance” type.
The 24-hr-early-release version was good enough that next, I saw a palliative doctor, a relatively new field of medicine that focuses on maintenance. He was very nice and tried to be the most helpful doctor I’ve seen yet (tried to be for reasons that will be clear). The cancer caused me to lose the use of my legs, you recall (that’s how we got here in the first place), so maintenance will include physical therapy so I can learn to do spins and dives in my wheelchair in the supermarket aisles (okay, I’m not quite up to humor yet, sorry), studying to see if we can ever look at moving back home or whether we’re talking facility, and pain management. He doubled my morphine dose, and gave me a whole new perspective on pain management. I can’t run around (oay, so the humor still isn’t working) all day hooked up to a morphine bag and IV, so he needs to put me on a pill of the correct strength that it knocks out the pain. He doubled my dose and told me anytime the pain passes the comfort barrier (but without going past the slobber barrier) — he said, I believe, that he didn’t give out prizes for John Wayne imitations — to push the button. He then gathers the data, and can use it to start trying pills like Dilaudid, oral morphine, that sort of thing.
I’m likely moving to a facility, after we find the best option. The purpose of the facility is to learn how to better exist at home, whether I ever end up moving home or not. Maybe, maybe not, depends on how I cope with reality, I guess. Either way, can I take all, or most, of the nursing staff here? The nurses here are really great, and I don’t ever want them to leave.
My brother flew in from Indiana. He is not taking this well, and that makes me sad. I am starting to understand — really understand — what is meant by not being a burden. Really understand, down in my gut understand, and not intellectually understand. I hope I can do everything possible to avoid being burdensome. He isn’t the only one. Christopher is not handling this well either, even though he wants to seem to be. If you were here in the oncology ward of this mega-hospital complex, you’d see just how much care is involved. One person cannot do all of this. Anyway, that’s kind of a tangent. Stick to the update.
And that’s pretty much it, medicine wise. Holy Trinity (my parish) is being so supportive it brings tears to my eyes. I hope and pray I can live long enough to return to worship there, and return some of the love they have shown me. Father Alexander, from St Michael the Archangel Orthodox Church in Louisville, Kentucky, said he is trying to come next weekend. I cannot describe how much this would mean to me, since Father Alexander took it upon himself to save my soul these 25 years ago. Father John, my parish priest, has been a show of virtue and strength, and has helped me more than I can say, and the other night, Deacon Alex was here for a long visit, that I found comforting. I could use more of those, and I am very glad he came. One can perceive a show of virtue, but having that virtue come sit by your bed, a physical presence, is so much more powerful. I enjoyed our visit, and look forward to more.
You know, if I denoted the interruptions here as elipses, you wouldn’t be able to read the English for the dots. They have to do blood work. They have to change the IV site. They have to turn me. It just never stops. So while I am at a position where I’ve given you more or less all the news, I will stop here. More updates as they become available.
UPDATE: It appears from what one of the doctors said (it’s been a near constant flow of doctors in and out) that I’m to get the “official biopsy release and talk” later this morning. It could be that I get information I didn’t previously have, and if so, I’ll pass it on, but if we haven’t discussed “the options,” what were we discussing yesterday?
21 responses so far
Thoughts and prayers with you today.
It sounds like you are doing exactly what you should. Keep leaning upon your parish. It’s what they are there for.
Thank you, Clay. If it’s any consolation, hon, you still sound like Clay!
More when I can. I’m still taking this in too.
Love you.
Missy Bou
I don’t know you as well as the others, but I’ve been following your comments for a few years, and, well, am thinking of you through this difficult time.
You will find, I think, that those nurses deserve a special place in the hereafter…If they keep changing your IV site, eventually, maybe, they’ll put in a port which will solve that problem. I think of you daily and I know the folks here at IU are doing the same. Please keep us updated and tell Xtopher to write whenever he feels like it. Humor will bubble up…
Keep fighting. Never stop. Utilize your church and your faith. And let us know if you need anything.
Praying for you. Never give up. Burdens, by the way, are things people don’t want to bear. As a caregiver to my folks, I may get frustrated and exhausted, but they are not a burden.
Prayers still going up for you and your family.
You know, there were several times in my life that were bad…really…really bad. My faith in God was, and is what keeps me going. You have a strong faith in God, and God knows that, and you. So no matter what happens you’re covered. Just take it one day at at time. I know it’s an old saying, but it’s the truth. Anyway, stay strong and keep writing, it’s good therapy.
Thinking of you and Christopher. Like Bou, I’m just taking this all in and trying to believe it. Not there yet. Wish there were something I could do besides wish you the best.
Thanks for the update. Words fail me. You have my prayers and thoughts. I had the privilege of spending 3 summer sessions with Fr. Alexander at St. Stephen’s Course, it made me smile to see him mentioned by you. God be with you, brother.
I’m praying to St. Peregrine, and keeping you in my thoughts.
Hang in there.
Keep your thoughts positive and your faith strong.
Blessings to you and your family.
Chris
rwp, I come from Wyatt’s blog to wish you the best, in your battle with this terrible disease.
I have lost many relatives to cancer, you will be in my thoughts and prayers, good man.
Sir, never been to your site before but I wish to say you are one courageous and inspirational person. Guaranteed, I will be visiting your site frequently and praying for your recovery daily.
Clay, I’ve been following your blog daily for at least two days. I respect and trust the things you say. That’s more than I can say for many bloggers. In this time of crises in your life, keep clinging to the Cross of Jesus. He is truly Faithful, and has told us that we will never be tried beyond that which we can handle. There is triumph in Jesus that trancedes all the troubles and problems in this world. Job, I think, puts it best: “yea, though He slay me, I will trust in Him.” I am praying for you and your doctors, that God’s will for your life will be His healing power upon your life. May he bless you and keep you in His perfect peace!
Tim P
I am praying for you.
Never think that you are a burden…never. Your loved ones and your brothers and sisters in faith want to be there for you to help. They might not know what to say or do, but you are and will never be a burden.
I’m sorry you have be experiencing this heinous disease. Truly sorry.
Prof, you’re an inspiration.
Wyatt sent me.
I’m impressed and humbled by your humor and tenacity in the face of such travail.
May God bless you.
Also new here, a reader of Wyatt’s site. Although new on this site, I am so deeply touched even by the little bit I have read.
My thoughts, and especially my prayers to and for you.
Wish I could do more, but know you are in my prayers. That you even attempt humor is a good thing and, hell, you made me chuckle.
From another lurker who heard about your situation from Wyatt.
From your writings, I’m amazed at how brave you are being in facing your sickness. I hope that I’ll be as up to the challenge as you are, when I eventually have to face similar hurdles in my life.
God bless you Prof. We’ll be praying for you.
Coming over from Wyatts blog as a couple of others to wish you well in your fight! My father in law suffered with lung cancer & he was NEVER a burden to us EVER…as you are NOT as well :) You will be in my prayers.