Sunday, November 30, 2008

Letting Go...Ad Nauseum

Lately I have found myself imagining what life will be like once I no longer have an ostomy. Then I remind myself that based on current medical science, there will be no day that I no longer have an ostomy. I'm amazed that I still find lurking in the back of my mind, thoughts about this thing being temporary.

It has crossed my mind that I may still view it as temporary because I still have some things to learn about, i.e., irrigation, which I will discuss with Dr. Cagir and an Ostomy Nurse on December 2nd. I have a feeling that irrigation may not provide me with the option of simply wearing a "bandage" over the opening for the remainder, which is why people irrigate (from what I read). However, I am still very much interested in the possibility of irrigation in hopes that it will at least, well...how do I spare you the details...reduce the amount of maintenance required on any given day. I can't imagine how it wouldn't provide me such a convenience and I'm going to hold out on any test runs until after my meeting on December 2nd.

I guess what's there for me right now is that I am not "complete" with the whole thing. I have yet to let go of how life "used to be." I know I will. Be disappointed about what can't be changed gets pretty old and pretty boring pretty fast. I'm not really interested in that approach to life. And right now, I am definitely still hanging on trying to figure out who to be mad at. Kind of silly and quite real at the moment.

Wednesday, November 26, 2008

Letter to the Editor

I sent a letter to the editor of Ode Magazine, expressing my appreciation for the article they did on Dr. Servan-Schreiber 's book Anticancer: A New Way of Life. And my letter made it into the December issue.


Note: Once you get to the digital issue, drag the scroll bar on the bottom to the pages 12/13. And there is a zoom option on top which makes the article much easier to read.

Tuesday, November 25, 2008

Voices of Survivors

Voices of Survivors is a website created by Lynn Lane - a survivor of prostate cancer. Lynn is an online friend I made after I stumbled upon his cancer blog one day while perusing the web for the cancer blogs of others.

Voices of Survivors is in the beginning stages and exists to give voice to those who have survived cancer. Each short video is direct, concise & simple, yet exhibits the power of something uniquely beautiful: the voice of a survivor. I know very little about the project, but I love what I have seen so far.

I only received the link from Lynn moments ago and had to share it with you as soon as I saw it. It quickly triggered a thought for me. Or I guess I should say a question. Inside the context of cancer, what is a survivor?

For me, a survivor is someone who has found the capacity to live a life they love - empowered - as fully as they are able - while they endure their journey with cancer. A survivor may die from their disease, or from something else for that matter, but they are a survivor nonetheless because they did not succumb to the fear, the anger or the hopelessness that can so easily consume a person unwilling to accept the road that lies before them. And for those who have succumb to the darkness that lurks about the minds of those who have been diagnosed with cancer, I acknowledge each of them simply for having to hear the words, "You have cancer."

There is indeed something to be said for those who beat cancer and live for many years to follow. But for me, a survivor is someone who chooses to be alive as they face the possibility of death. Some will live. Some will die. But those who choose life - even while they are dying - to me - are by all means Survivors.

Do you agree? Disagree? How do you define a Survivor? I'd love to hear what you think! Click here and let us know.

If you haven't checked out the website yet, click on the link above. Again, the sight is still in the early stages, but it's definitely worth checking out.

Monday, November 24, 2008

Better Off Bald

Well, there you have it. I was just losing hair faster than I could clean it up. Then Daniela walked by as I was sitting at the kitchen table and noticed a growing bald spot on my head. So, I took the initiative and shaved off all of my hair.

video

I'll try growing it back in the Spring!!!

Where's My Morphine???

Wow! I am amazed at the degree to which the morphine had masked the pain and discomfort that results from the Neulasta shot I receive on the day that follows my bi-weekly chemotherapy treatments. The shot stimulates the production of white blood cells because it is white blood cells that are inadvertently destroyed by chemotherapy. And as a result, there is pain that shows up in the body's largest bones since that is where the greatest number of white blood cells are produced at this faster than normal rate. A little Extra Strength Tylenol seemed to help reduce the pain a little bit.

Had I known, I would have waited to kick the morphine until after my full regimen of chemotherapy was completed in the Spring of '09 and as a result, had a far less painful experience. Oh well. Too late for that!

Eat, Drink and be Healthy

In their November 2008 issue, Ode Magazine printed an excerpt from French psychiatrist and neuroscientist David Servan-Schreiber 's book Anticancer: A New Way of Life. He discusses the impact that diet, exercise and a positive attitude has on healing. It's a great article which provides another push forward in our cultural conversation about cancer and our bodies. Click here and have a look!

Sunday, November 23, 2008

Hairball!


Oh yeah! That would be a ball of my hair in my hand. It would seem the Folfiri chemotherapy is starting to pick away at my hair follicles. I'll be sure to post the bald photo should it get that far. However, considering how thick my hair grows, it may take a while for that to happen!

Friday, November 21, 2008

Movember

Have a look at this great and playful organization: Movember founded by Adam Garone in Australia. It exists to raise money and awareness for men's health - specifically Prostate Cancer - by the growing of mustaches every Novmber!

Excerpt from Daily News article:
"Mo" is Australian slang for mustache, and turning November into Movember is the brainchild of a former Melbourne phone executive, Adam Garone. Instead of strapping on sneakers for a walkathon, Garone and his fellow "Mo Bros" did something far more grueling - they raised money by growing mustaches for a 30-day whiskerathon. "The mustache is male only, and we wanted [to raise money and awareness for] a male-only disease," he said.

Read more or watch a short video interview. Note: At two different times during the video interview, the interviewees do use some slightly provocative language or terminology that I wouldn't want my 10-year old hearing. Just thought I would let you know in case yours is sitting next to you!

Giving Thanks

Being that we are coming up on Thanksgiving here in the USA, it dawned on me that it is time that I acknowledge the difference this blog has made for me. Sharing my updates, excitement, concern, joy, fears and insecurities has been incredibly fulfilling because it has allowed me to grow in ways that I had never imagined. The more honest I am with you, the more freedom I have to truly be myself everywhere else in life. Once "the cats out of the bag" there's no more pretense. I then find the freedom to be the real me and finding the freedom to be my true self with the people in my life - in my world - is a real privilege.

And why am I telling you this? Because if you didn't read it, it wouldn't exist as a blog. It would be my private internet diary. And although I initially started the blog only to inform those in my life of my health status and eventually the needs of my family, as you just read, it has become much more than that to me. So, thank you.

That being said, I would like to offer you an opportunity to ask me any questions you might have about my experience. Really - anything.

Anything from D-Day [in my world, that would be Diagnosis Day!] right up to today or my future or pre-diagnosis for that matter. It has been great to have you along thus far and at it just makes sense that you may have a question or two.

I am also aware that many people enjoy the anonymity of the internet and would not be interested in advertising their names with a question regarding the intimate details of my life. So, if you have a question and prefer to remain anonymous, simply click on "comment" under this or any other entry. Below the comment box is an option to post your name with the comment or to remain anonymous. You can even click on preview to confirm that your anonymity has been maintained.


Also, I now have a section on the left side of the blog for those of you who would like to add yourself as a follower of the blog. Initially, I couldn't think of a reason to have it here until the other day when it dawned on me that it might interest you what different types of people follow this blog. Via Google Analytics, I am able to see the number of people who read the blog, but what had me decide to add the "follower" section to the blog was the number of repeat visitors
revealed to me on my Google Analytics page. And no, I can not see who the visitors are - only what part of the world you click in from (essentially, the city or town location of the server you use) and the frequency of which it is visited. And I guess that also led me to ask folks to consider becoming a follower - so I can see who you are. I love the relatedness this blog has created.

And this blog has not been just about me for quite some time now. Your comments have made that quite clear. If you do choose to become a follower, again, anonymity is still an option for those who choose to not paste your face "all over the internet." You can post any image you like an even a username other than your birth name. Have a look at follower section. Reverend Malachi is a perfect example!


And yes, as Maria posted a comment about her experience with chemo-induced insomnia in a comment not to long ago - it is very real. And it is currently a part of my life. My friend Jim mentioned that a little golf seems to ease him back into a relaxed mode when he can't sleep - putting I suppose. But I imagine I would need a putter and a golf ball to achieve such peace and that I do not not have. However, a bowl of cereal and the internet sure are a beautiful thing when I'm wide awake in the "middle of the night." But an a more personal note, add insomnia to my already fuzzy chemo brain and it's amazing I remember anything Daniela asks me to do. God Bless her. I love you sweetheart!!!

Wednesday, November 19, 2008

Relapse vs. Mortality Statistics

At my meeting with Dr. Allerton yesterday, he reviewed with me the statistical probability of cancer relapse and cancer mortality. The analysis was based upon:
  1. Age: 38
  2. Gender: Male
  3. Comorbidity (Health Status - other than cancer diagnosis): Perfect
  4. Depth of Invasion: T4 - Maximum within the stage
  5. Positive Presence of Lymph Nodes: 1
  6. Examined Nodes (following surgical removal): >10
  7. Histologic Grade (Stage):  Grade 2
  8. Stage 3 (I was a stage, but treated as a Stage 3 due to minute cellular presence of cancer cells in one lymph node)
Calculation of risk of relapse within first 5 years 
without current post-surgery chemotherapy: 49%

Calculation of risk of relapse within first 5 years 
with current post-surgery FOLFURI chemotherapy treatment: 20%

Calculation of risk of mortality within the first five years 
without current post-surgery chemotherapy treatment: 42%

Calculation of risk of mortality within the first 5 years 
with current post-surgery FOLFURI chemotherapy treatment: 22%

I then asked Dr. Allerton if the software was able to account for there being no traceable cancer in the tissue removed with surgery and he said it was not. My specifics results are extremely uncommon in the world of oncology so there is no statistical equation for it. It's pretty much a random occurrence in their world.  (Gerson Therapy, BABY!!! Thank you everyone for your support. xoxo) However, he did provide say that considering the 100% disappearance of cancer from my system, the risk of relapse or mortality is even lower. I didn't ask him for a number, but I say it's down by another 50%, putting it at 10% relapse and 11% mortality.

I have to be honest - 10% ain't perfect, but it's pretty damn good when it comes to cancer. Yesterday was a good day.

Tuesday, November 18, 2008

#4

I am thrilled to tell you that it seems I am 100% free from my morphine DTs. I have not had any withdrawals since Saturday. Pretty cool, huh?

And I can now say with confidence that any concerns anyone has about my addiction and the possibility of my going back on morphine, can rest easy. I can say with certainty that it has not even crossed my mind to take morphine at this point. The addiction was 100% physical - not at all mental.

I also had an opportunity to be able to talk about my use of morphine addiction with a fellow chemo patient today. She's an elderly woman who has serious reservations about taking morphine. The reason? Fear of addiction. It's amazing how powerful an impact addiction can have on a person - even those in a great deal of pain, like the woman I spoke to at the clinic. She even acknowledged the absurdity of her decision, given that she is Stage IV, and at this point, receives chemotherapy treatment in order to extend her life for a little while longer. The doctors do not believe it will disappear.

So, I received my day one chemotherapy treatment today - #4 out of 12. I am now one day short of being one third of the way through my regimen. And I am thrilled to say I was given a different anti-nausea pre-med: Reglan - which also provides hiccup relief. And the result? For the first time in my history of chemotherapy treatment, I did not immediately fall asleep from an anti-nausea pre-med. I actually hung out and talked with my friend Jerry and the staff throughout the entire treatment.

And the real breakthrough is that I actually drove back home after the treatment. But rest easy - I was not pushing myself or being careless. I drove because I felt great. Jerry and I even stopped at a classic Upstate New York style diner for dinner because I was starving. And again, this was for the first time in the history of my chemotherapy treatment - to eat anything following chemo. Today was a great day.

Saturday, November 15, 2008

Hopefully I'll Fall Back Asleep Soon

I still seem to be experiencing morphine DTs around the hours of 10 & 11 PM. However, it is significantly less than the previous experiences. What really throws me is not being able to sleep at night. I fell asleep around 10 PM this evening then woke up at 2:30 AM. It's 6:23 AM right now. Hopefully I'll fall back asleep soon. And hopefully this isn't a result of chemo and therefor to be expected from now until April - that would be a bit much!

Thursday, November 13, 2008

Side Effects or Symptoms

The DTs don't seem to be showing up at the moment. Last night that "caught myself falling from a chair" feeling got pretty bad and kept me awake a couple of different times last night. Right now
I feel like I have a cold – soreness in ears and slightly in throat and a little achey. I'm uncertain if it's DT side-effects, chemo side-effects, chemo-related weakened immune system side-effects (sometimes showing up as cold-&-flu-like-symptoms) or maybe even actual cold symptoms.

And which ever it is, I look forward to these morphine DTs disappearing for good.

Wednesday, November 12, 2008

The Beautiful Truth

Below is a link to a trailer for the new film on Gerson Therapy and the modern approach to healing cancer. The trailer is quite short, just click on the image below.

Tuesday, November 11, 2008

Somewhat Maddening

Well I made it through the day pretty well. There was not a lot of pain. The emotional roller coaster is pretty intense. I was deeply moved by many things. Not uncommon for to be deeply moved, but the degree was extreme even for me. Once the sun began to set, I began to feel better and better. By dinner time, the pain was just about gone. Amazing.

Then about an half an hour ago, I started getting really tired. And now my body is doing the tense muscle thing again where the muscles have the extreme sensation that they need to be flexed. It's like they want to twitch but they won't. To tell you the truth, when it happens, it is somewhat maddening. All I can do is just ride it out. And I hope I get some relief from it so I might have an easier time sleeping tonight.

Man these DTs are nutz!

Pain & Discomfort

At about 4am I woke up with my muscles feeling that way that I imagine only a physical addiction can create. It's the strangest feeling. It's as if the muscles ache as they struggle to move and I say that because movement relieves the ache. But the relief is only temporary because the minute I stop moving, the discomfort returns. And to wake up to it as I did this morning is quite a shock because I instantly started moving as soon as I woke in order to create some kind of relief. Fortunately, for some odd reason, I experienced some relief after about twenty minutes of discomfort and that relief is still relatively present.

And at the moment, I feel alright. Not great. But alright. We'll see how the day goes. Only one to three more days of this and I should be on the other side of it. At least that's what Daniela read on-line about quitting morphine "cold turkey."

Speaking of which, I suppose if I'm going to quit this stuff "cold turkey," I am going to suffer. But the way I see it, I don't want to drag this out. If I'm going to do something, I want to get it done so let's get on with it. So, if to end this addiction abruptly, I must experience a little pain and discomfort, so be it. Let's just get it over with.

Monday, November 10, 2008

Withdrawals Continue

I slept relatively well through the night and woke up feeling like I have a fever. I think that is the best way to describe how I feel at this particular moment - like I have a fever. However, the remedy for relief would only perpetuate the addiction and prolong the pain from withdrawal.

So, I will continue to stay as immobile as possible and simply rest my way through this experience. My body still hurts as I described yesterday, but it is at a slightly lesser scale.

Sunday, November 9, 2008

...and reeling...

The pain I am experiencing from this withdrawal and detox is fascinating. The pain is throughout my body from my toes to my eyeballs along with hot and cold flashes that come and go. The greatest aches are from my elbows and forearms into my wrists and hands as well as from my hips through my knees and into my calves and ankles. I also have pain in my eyes - directly under my eyelids. And the inside of my mouth hurts as well, specifically the roof of my mouth.

Throughout the day I have also had back pain in the thoracic vertebrae. Daniela has kindly rubbed my muscles when the pain has gotten intense. At the moment, my hands are killing me, but for some reason it's not making typing difficult. And my ears ache as well. Ya know, I guess it's safe to say that I am in pain just about everywhere in my body - from my toes to my eyeballs [I feel like I've heard that somewhere].

So that's the update and I hope I can tough it through without taking anymore Roxanol. I want to get this over with as soon as possible.

My Body is Reeling

My body is definitely reeling from this morphine withdrawal. I ache from head to toe - muscles and joints. Even the skin on my forehead aches. This is not something I am used to.

Thank goodness there are football games on right now. And thank goodness we had a back up TV. Our good TV bit the dust the other day. Fortunately I was able to lug the old one from the guest room down into the living room. Between chemo-brain and morphine withdrawal, staring at a television is a VERY EFFECTIVE way to deal.

I'll update you if anything changes...

My Latest Adventure

My latest adventure, with the help of Dr. Allerton, is to get off of morphine for good. I was on a 25 microgram patch for...quite a while...many months. A month or so ago, Dr. Allerton put me on a 12 microgram patch for which I noticed no withdrawal symptoms.

On Friday November 7th, my patch was due to be replaced (they must be replaced every three days). On Wednesday November 5th, during my chemotherapy treatment, Dr. Allerton recommended I not replace the patch on Friday and instead simply take a 5 mg dose of Roxanol (liquid morphine) when ever the withdrawal symptoms become too much to deal with. The idea is that I will eventually no longer require the Roxanol and be able to push through the detox symptoms (commonly know as DTs) without the use of it.

I'm looking forward to no longer being on the stuff. As I have posted in the past, I have woken up in the middle of the night going through a detox because I forgot to replace my patch a few different times and it's quite an unpleasant experience. I definitely look forward to being without it. The only part I left out is asking Dr. Allerton how long this process is expected to take. I'll have to send him an email and find out.

Saturday, November 8, 2008

Thank You

Thank you for your support. Simply showing up on the blog and checking in to see how I am doing means a great deal to me and because of it, I do not feel alone. Or maybe I'll say it differently: because you show and and check in on me, I feel supported by more than just my family and immediate community. And I thank you because of the extraordinary difference it makes to me and those closest to me.

A Choice Well Made

Good news from Dr. Vakios in the radiation department. He said there are no studies or statistics to refer to when it comes to a case such as mine, i.e., no present sign of cancer following chemo, radiation and surgery. So, he does not recommend treating with radiation at this time unless, as he put it, "I have deep, deep gut feeling that radiation is the right thing to do at this time."

Well there are always dangers when radiation is administered. And at this point, my gut feeling says go forward with the chemotherapy unless something changes. I have three more tests (one every three months) within the next nine months to scan for the presence of cancer and at the moment, I do not feel a need to go forward with radiation. So, I will stick with Dr. Vakios' recommendation. Should there be a sign of potential reoccurring cancer, then the possibility of radiotherapy will be revisited.

At the moment, I feel quite toxic from Wednesday through Friday's chemotherapy treatment. So, I am staying active, doing things around the house that are safe and will not put anyone in danger, since I am currently a bit "spacey" due to the chemo's impact on my brain - "chemo brain" as it's called.

I also want to add that I really enjoyed my meeting with Dr. Vakios. My experience of him was of a straight shooter - the kind of doctor you want to work with when your intention is to stay alive. My gratitude is extended to Guthrie/Robert Packer Hospital for a choice well made.

Friday, November 7, 2008

I Am Back on the Chemotherapy and Happy to Be

I am feeling well - cold symptoms gone - and I have returned to chemotherapy. Day one and two both consisted of Folfiri infusions in the clinic and at the end of both days I am sent home with a 5-FU pumped attached to my port. Today is day three, so I go in to have my 5-FU pump removed. I am a little tired and a little dizzy. I am also experiencing hiccups and heartburn like last month, but I am not nauseous so far and that's a plus.

I will also meet with Dr. John Vakios today, the new radiologist at Guthrie in Sayre, to discuss the possibility of additional radiation treatments. If he recommends more radiation, which I think he may, I will likely obtain a second opinion. My decision to get a second opinion or not will be heavily on whether or not he has dealt with a case such as mine - where there is no longer a traceable amount of cancer in my body.

I must confess that getting a second opinion in another hospital where my insurance is accepted sounds a bit exhausting to me, but I keep reminding myself there are dangers if I do additional radiation treatments as well as if I don't. Bottom line is I will have a better idea after I speak with Dr. Vakios this afternon

Monday, November 3, 2008

What the Ostomy is Like for Me Lately

Lately, what's confronted me is how to deal with a certain aspect of my ostomy. And it is an aspect that I have not been to thrilled to be blogging about. Gas. See, now that my large intestine finds its way out of my body on the left side of my abdomen and is no longer attached to a sphincter muscle, I no longer have the capacity to manage it at will.

Okay, so right out of the gates, we're all clear that because of the ostomy I am alive. That's no secret and I would do it all the same were I to go back in time and do it all over again. So, although I am not without gratitude, and happy to have gotten back to a somewhat normal life, I am committed to living a life as "normal" as possible and that would include life without the unmistakable sound of gas exiting my body - at an inopportune time to boot. [did i spell that properly?]

Again, it's not life ending or even a threat, but let's be honest - we have a cultural conversation in this country about not passing gas in public - or at least not loudly - unless of course you are in the company of those whom you most enjoy laughing joyfully about the sounds your bodily functions. Unfortunately, I have yet to create that relationship with every person I know and for that matter, all those I don't.

I have begun to take on certain proactive methods of dealing. Beano, for one.
[...i can't believe i am even writing about this. gas is something i either hide from others or laugh about among those i'm close with. not something i have mature conversations about. and now i'm talking about beano. how awkward!!!]
So, yes...Beano. And I am also avoiding carbonated beverages and of course any foods that can put a bottle of Beano to shame. And then there is the irrigation.

Irrigation is a daily process that is an option for some people who have ostomies on the left side of their abdomen. It's very similar to an enema - something I'm a little familiar with. The idea is to flush out the colon first thing in the morning once every day or two and eventually have your colon trained to only empty following an irrigation at that time. Then the individual gets to wear what looks like a large bandage over the stoma as opposed to a pouch, which can sometimes be a bit bulky or, without irrigation, needs to be discarded at an inconvenient time. My hope is that I will be able to effectively irrigate in the near future. Not only will it be nice to be free of pouches, etc., but I believe this will significantly help with untimely gas once I get the hang of it.

In the mean time, at least my ostomy pouches have a very effective carbon filter. Oh yes, joy, joy. So, should I be "blessed" with unexpected gas at an inopportune time, I won't have to worry about the damage being any worse then the initial shock following that ever so familiar sound.

And now that I've made that clear, I hope we can all just move on and leave this topic behind.

Sunday, November 2, 2008

Cold Again

I have found myself with another cold. And I'm very much hoping I will be overwith by Wednesday. I have got to get back to the Hematology Department and receive my chemotherapy treatment. I'm scheduled to be there on Wednesday November 5th and like I've said before - the sooner I get back to my treatment, the sooner my treatment will be complete.

To tell you the truth, I have had one heck of a pleasant chemo-free month. I've got some things done around the house and yard on the days I have felt well. It feels so good to actually be useful. And this Autumn has been so gorgeous, I have definitely taken advantage of it - walking as much as I can - again - when I am feeling well enough to do so.

In the mean time, I will continue to eat lots of miso soup with plenty of sea weed in it. It's a wonderful natural cold medicine.