Hello, all
Am about to start the whole RAD procedure and suddenly have a black hole in the pit of my stomach. I've done quite a bit of research and "lurking" on various boards (I really like this community by far the best), and feel I'm going into it with open eyes. I've requested....and gotten IMRT, the head doctor, and the best research facility in this (Atl) area. (Emory).
I go in tomorrow for my initial simulation, which I think is mostly for making a mask and marking the area to be treated. *(please feel free to stop me at any time to update me on misguided/incorrect info!):-)
I know I won't start treatment for a while yet 'coz I succesfully gave myself pneumonia over the weekend....seems I thought I was better than I was from recent chemo treatment and broke up a man's drive with a sledgehammer, chopped roots, poured new concrete, got paid (hey, the bills don't stop just 'coz I do!),came home and promptly collapsed on the couch where I remained for about 12 hours when I woke in a fever delerium. ok, dumb moves all around, even though I hired a laborer who did 90% of the real work.

My real point is that work keeps my mind happily occupied....and incapable of producing panic attacks. I've had no choice but take it EXTREMELY easy this past week- even climing the stairs became a well pre-planned event lasting an interminable amount of time. My mind has become my worst enemy. I've become obsessed with RAD side-effect stories (thankfully both good and bad) in anticipation of what, my mind tells me with authority, is going to turn out to be the very worst RAD horror story ever told. I've had an extremely bumpy ride so far...as far as the emotional, dehumanizing, relationship-crumbling, family ignorance and lack of support issues; but feel EXTREMELY lucky that I got through 3 week-long chemo hospital stays with very minimal side effects (and no lives lost). The worst being of course, the mucositis that seemed to stay around forever. Sure, my hair is much thinner, but I never was a chippendale model. I don't even mind the funny way just the top couple of layers of my fingernails (and TOES) would make that crescent moon pattern and grow out.
The point is that they are still GROWING OUT. That chemo saved my life and probably put somewhat of a brake on the life cycle of my tumour, but I went into it with all the fear and dread that was possible for my overactive mind to dredge up.
I literally find myself in cold sweats while poring over the tales told by you kind, wonderful gentle people. I admire beyond words your amazing strength-even in the face of death, and equanimity.
OK........I WANT SOME EQUANIMITY........NOW!!!!!!!
;-)
Is this a common feeling to take it to these extemes? I KNOW that not EVERY horror could possibly happen, but I don't FEEL that way. I just don't think I can deal with 7 weeks and possibly years of recovery time chained to a mind that multiplies everything by a factor of 6 and an emotional stature of an infant.
YIKES!!! In re-reading this I can only give myself the following advice, "get thee into the company of others who share your affliction." Pretty profound, huh?
I guess it all boils down to just trusting God and letting him work in and around me. I came upon a wonderful poem immediately before I started writing this, and I'm sorry, I don't remember who posted it (possibly Joanna?) anyway, I copied it and would like to post it again, as it really spoke to me. Much love and many thanks!
Gordon
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If God brings you to it, He will bring you through it.

Happy moments, praise God.
Difficult moments, seek God.
Quiet moments, worship God.
Painful moments, trust God.
Every moment, thank God.

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Gordon,
I finished IMRT on March 19th and while it was pretty miserable at the time and afterwards for about 6 weeks, I am happy to report that I am doing really well now. Food tastes normal again, I am eating well, good appetite, fatigue is much less. I did a 7 hr DJ gig last Saturday and am doing a live music one (I also play bass) next Saturday. So life is resuming back to normal. I have no trouble swallowing and except for an occasional episode with thrush and ongoing dry mouth - that's IT!

Like you, I knew too much so I asked for Zanax and it really helped (it melts in your mind, not your mouth ;-)

My chemo regime was a little different, I "only" had 2 Cisplatin treatments, 1 the first day of radiation and the second on week 3. It was one tough hombre -very humbling. I really can't tell you which was worse - the chemo or the radiation. I reacted poorly to the chemo for a long time.

You can get through this. It's not the most pleasant experience but most of the nastier side effects can be mitigated with medications. I did rely heavily on opioid pain management (Fentynal patches [Duragesic] and morphine tablets (they were much smaller and easier to swallow than Vicodin) for "breakthrough" pain - usually while eating. I had a few courses of antibiotics for various minor infections and still take Diflucan.

I didn't even get a PEG tube.

There are some real horror stories on the net, but honestly, not all of us have that experience.

You ARE extremely lucky (I like to say blessed) that you got through the chemo so smoothly - I didn't. You are also very blessed to qualify for IMRT. I am positive that it mitigated a lot of the side effects and shortened my recovery considerably. In my case, it was the radiation that saved my life. The chemo was an adjunct.

I didn't have surgery either, as the tumor was well contained and there was no metastesis or lymph node involvement, in spite of the size of it (6cm x 3cm by time treatment commenced).

It's 140 days for me today since my last rad treatment and I'm feeling pretty good, have gained 10 lbs and am enjoying life again. You will too.

You must learn to pace yourself however or you will have setbacks. A compromised immune system is nothing to fool with.

It's not about dealing with 7 weeks of this or years of that - it's about dealing with it ONE DAY AT A TIME! You can get through this - one day at a time. If you don't stay in the "now", you WILL drive yourself crazy.

It sounds also like you are a person of faith, let go and let God. Be in prayer about ALL things. He answered so many of my prayers dealing my treatment. I burned my own CD of some thumpin' Gospel music and listened to it every day during treatment and it really helped me (even if I drove the techs nuts). Made the time go by faster too and gave me something other than my "magical magnifying mind" and my fears to ponder. Most treatment rooms have sound systems. Mine even had a Lava lamp!

Gordon,
It is only natural to approach radiation with some trepidation. I was probably the opposite..going into it thinking that it would be no big deal. It is a bit of an ordeal, but it is over soon enough, and then you can begin healing and get on with your life. From what I have learned, I am one of the slower healers here, as I have had swallowing challenges that many have not faced, yet slowly but surely , things improve.

I also do not believe that God made me sick or that God healed me. I am thankful that I had the loving support of family and friends and excellent doctors. With that I got through it just fine, and that is enough for me.

Hang in there buddy, you'll do just fine.

Danny G.

I need to clarify my last paragraph. First off, like Danny, I don't believe God gave me or us cancer. The God in the bible wants to prosper us, loves us as his own children and never causes us harm.

There are darker forces "...prowls around like a roaring lion looking for someone to devour" (1 Peter 5:8) who rule the earth and that's where things like tobacco, alcohol, drugs, addiction, MTBE, Love Canal, corporate greed, terrorism, pollution of the oceans and the air we breath, etc., and diseases like cancer come from.

I prayed for wisdom for my doctors (and myself to make the right decisions) constantly and trusted that God would heal me through them and I believe that He did. Most of them weren't Christians but so what, God can use anyone He wants for his good purpose.

Like Danny, I also had the close support of my wife, who loved me unconditionally throughout the ordeal, in spite of my self centered, nastiness at times, my own, and her own fears. I (we) also had the love, prayer, financial and personal support of my church family and anonymous people (within the church) who just came forward and just gave me thousands of dollars to pay for health insurance, etc.

I have outlived almost all of my birth family, so they were my "extended" family and have been for many years.
Incidentally, my sister, father and stepmother died from cancer. My mother had numerous major cancer surgeries.

I am not trying to start a religious debate here, only sharing my own very personal story of experience strength and hope. I am certainly not trying to preach or offend the non believers out there. Those of you out there who are persons of faith will know what I am talking about.

Also from 1 Peter:10-11 (NIV)

"And the God of all grace, who called you to his eternal glory in Christ, after you suffered a little while, will restore you and make you strong, firm and steadfast. To Him be the power for ever and ever. Amen"

Take a DEEP, DEEP breath, Gordon.

Now. First off, it was Amy who contributed that beautiful and moving poem.

Secondly, IMRT isn't worth the emotional energy you are expending worrying about it. Not exactly a piece of cake, but certainly not the most difficult thing you will encounter in your life. I had it. I got burned. I healed. I had thick, wallpaper paste saliva. It stopped. I had sores in my mouth. They healed. And Gordon, I can spit! I can lick envelopes, and I do not have to carry a water bottle. There are millions of people who would trade you and me for the option of being able to have saliva, so do not for one second forget how fortunate you are! It is natural to be nervous, but please, please know you can get through this and come out the other end to resume your active life. In the larger view, this will be just a few weeks out of your entire life. It will pass quickly. It is something you opt to do so you CAN resume your normal life. Be thankful that it is available to you and know that there will always be support here from those of us who have gone before you. When you start to spiral out of control, just STOP and take a deep breath and say "if that woman can do it, I can too" (grin).
Joanna

I was trying to be subtle, but I guess that I need to express my feelings clearly. All this proseletyzing is offensive to me.

Danny G.

Danny, I don't view the foregoing posts as proseletyzing, e.g., attempting to change anyone's opinions or beliefs, at all. It looks to me that one person of a particular faith is attempting to provide comforting references to another person of the same belief. I do not find that offensive, whether or not I share those beliefs. I would hope that on this forum there is room for each of us to express not only our concerns, but our coping mechanisms. I do not wish you or anyone else to be offended.
Joanna

Joanna,

I strongly disagree with you. Filling up this forum with religious gobbledygook and quoting Christian scripture is , in my opinion, not a lot different than those who adamantly believe and try to push new age cures. I respect you and I respect others' right to believe whatever they want, but I find it offensive that the religious agenda is being pushed everywhere I turn, from justifying American foreign policy to social policies to prayer in school.

Certainly it is relevant if someone's faith helped them through their sickness. Although I appreciated the prayers that people offered for me, I depended upon my doctors' training, not prayers that they get wisdom from God. Quoting scriptures however, has nothing to do with telling a story how faith helped someone.

It is proseletyzing plain and simple, and as I said, I dislike proseletyzing, especially in an inclusive forum like this one. It is presumptuous, even arrogant in my opinion, and certainly inconsiderate. Someone's church may teach them that it is their duty to spread the word...but please, spare me from being saved by people who have an exclusive understanding of what God wants and thinks and does. It is meaningless babble to me.

I love this forum and many of the people who contribute to it. It was my biggest help and support when I was down and I needed help and support. We shared a lot together and it means a whole lot to me, and I like to offer my help to others.

However I lose my spirit for the forum when it is filled with someone else's version of the holy spirit. Sorry, but that's just the way that I feel, and , I suspect, Brian doesn't feel much differently than I.

Danny G.

I may be wrong, but I believe that Brian respects all of our views.

Lord knows, I've been there, and found him to be nothing but forgiving and fair. I tried his patience.....had a formal reprimand for things that I said, and realized he was right. I don't believe for one second that Brian would uphold one view over the other.

There are Christians, Jews, Catholics, Buddists......and many other faiths suffering this disease. Whatever upper power (or one you don't belive in) that sees you through this, is not for any of us to decide.

We all have our faith, no matter what the entity is, and we will continue to believe that it helped us through this. It could be God, or a friend, a neighbor, a doctor, .......you have had faith somewhere.

Just praise the fact that you are getting help. Whether in a spiritual sense....physical sense......emotional sense. It doesn't matter. We are here. We are all facing the same monster. Give it whatever name you want, and cure it however you can. Just don't let this forum become a stage for religious outlets.

Please?

Mandi

proselytize, v.,1. To induce someone to convert to one's own religious faith.

And to correct a few other inaccuracies and/or distortions: "Filling up this forum with religious gobbledygook and quoting Christian scripture..." is a bit of a stretch of the truth and a gross exaggeration. In almost 300 posts, that I have made personally, it's the first time I ever quoted scripture and the intent was to give comfort to someone fearful and suffering who already acknowledges a God in their life -not to convert them or witness to them. And only in this particular string, to the best of my knowledge. Maybe Brian is aware of others and can enlighten us. I do remember several months back a guy talking about "faith healing" but that was a pretty short lived string, as this one SHOULD be.

It's all about hope and a set of tools to deal with crisis. And I never said it was the only set. I am sure that Atheists, Agnostics, Deists, Buddists, Muslims, Hebrew, New Age, Scientologists or whatever have their set of tools also.

It was never my intention to waste Brian's precious disk space on issues not directly relating to cancer support, and if I failed in that endeavor, I publicly apologize to the group. Besides, I didn't bring up the subject of God, I only responded to it. And it wasn't about religion, it was about spirituality.

I can understand and empathize with your viewpoints having been an agnostic myself for many decades.

I'll let an excerpt the American Cancer Societies new booklet finish the discussion:

Facing Forward Series: Life After Cancer Treatment

This publication covers post-treatment issues such as follow-up medical care, physical and emotional changes, changes in social relationships, and workplace issues.

Part of the Facing Forward Series for cancer survivors, family members, and medical professionals. The series is designed to educate and empower cancer survivors as they face the challenges associated with life after cancer treatment.

To order a hard copy, call the ACS National Cancer Information Center at 1-800-ACS-2345, and ask for a copy of Facing Forward: Life After Cancer Treatment, Publication No. 9522.00-HCP


Finding Meaning Through Faith, Religion, or Spirituality
Dealing with a serious illness can affect one's spiritual outlook, whether or not one feels connected to traditional religious beliefs. After treatment, you and your loved ones may struggle to understand why cancer has entered your lives. You may wonder why you have to endure such a trial in your life.

At the same time, many survivors have found that their faith or religion or sense of spirituality is a source of strength as they face life after cancer treatment. Many survivors say that through their faith, they have been able to find meaning in their lives and make sense of their cancer experience. Faith or religion can also be a way for survivors to connect to others in their community who may share similar experiences or outlooks or who can provide support. Many survivors have found that religious gatherings helped them meet new people and find support through a trying time. Studies have also shown that for some, religion can be an important part of both coping with and recovering from cancer. As one survivor said, "My faith in God helps me hold life together. I would feel lost, afraid, and wandering about without it. I know that I am in God's hands, and that helps me feel secure. He gives me strength."

The way cancer affects one's faith or religion is different for everyone. Some turn away from their religion because they feel it has deserted them. It is common to question one's faith after cancer. "I had to wonder why a loving God would let people suffer like this," one brain cancer survivor said. "I just felt that God had failed me." These are difficult questions, but for some, seeking answers and searching for personal meaning in spirituality helps them cope.

Here are ways you may find comfort and meaning through your faith or religion:
- Reading religious materials that are uplifting and can help you feel connected to a higher power
- Praying or meditating to help you feel less fearful or anxious
- Talking about your concerns or fears with a religious leader
- Going to religious gatherings to meet new people
- Talking to others at your place of worship who have had similar experiences
- Finding resources at a place of worship for people dealing with chronic illnesses like cancer