Nov
6
2009
It’s quite something to have the relationship like I do now with my body. Every day, every minute I am in some sort of distress physically, which can become quite exhausting to say the least.
Also, it’s like the alleged Eskimos having 200 words for “snow”, I now have 200 words for “pain”! After about 10 months of being in daily suffering, I have developed a new respect for the simple things in life, especially if they involve anything anywhere near comfort! (sitting on a soft, leather car seat instead of my firm, cloth one for example).
I am not saying that every minute of my new life is terrible or anything, but I end up gritting my teeth through much of the day to simply walk, get out of a chair, bend over to tie my shoes, etc… Thankfully the ulcers and tears in my skin are healing and doing much better these days. On the flip side, whereas my eyes were much better this past summer due to the high humidity, the cold air now is drying them out and making them painful all over again! Ugh!
Every single day I tell myself and Katie that ONE DAY I will be there, I will be (mostly) pain-free. I have to keep telling myself this, over and over. Otherwise I become very depressed very quickly and start to eat huge amounts of sugar and gain (no kidding) 20 pounds in a week or two. (At least I know that I can pretty easily take off the pounds as well as I have done it before).
It’s also so strange to look at your skin, hair, nails, etc… and wonder what happened? Even for a brief moment you wonder if all of this was worth it? All of this, let’s be honest, living hell??? Of course it is, and God would not allow me to suffer without having gifts to give to others. I truly believe others when they tell me that I do not suffer in vain and that my gained wisdom helps others to overcome their own pains. I have to believe.
Nov
5
2009
We went down to Sandestin FL the past 4 days and really enjoyed our first family vacation together. While it was chilly around 70 degrees, it was also very relaxing.
Katie and I took advantage of the Hilton’s spa called Serenity by the Sea with a few treatments each. The boys were thrilled to be on the sand and surf and yelled out with joy as they played in the sugar-like sand. The water was nearly perfectly still and absolutely clear. The incredible sunrises and sunsets capped off a wonderful stay.
Oct
29
2009
Can we ever truly love another? If we are not 100% committed to ourselves, then what hope do we have in being fully open and accepting of someone else?
I wonder if that true love is really only a quality of our own relationship with ourselves/God and never really that of another fellow human?
We all say and sense that there is something “greater out there” and I believe it may be that we operate as our own puppeteer on some other level and on a day-to-day basis live this dichotic life of the “out there” personae and the “in our heads/behind the eyes” spirit. Said another way, our physical life may actually be static in some regards and we are all more or less sleep walking through life in the physical form, with our “true self” (or God as some may prefer) watching over our progress in one slice of time/one continuous moment of observation. We drive our life from the seat of God.
Words fail to describe adequately this topic as others have found throughout time. I am merely repackaging what philosophers have entertained since time immemorial. Since I am attempting to describe the indescribable, language does an injustice to these values since words are limited and I am attempting to describe the limitless. POW!
Back to the topic at hand: If all of this were true, and we could assume that what is “out there” for each of us is, as the Hindus say, merely “maya” or an illusion, and what is “real” is really only the “inside” or spirit/psyche/Christ-consciousness then would it hold that true love is only possible between our inner states (and not the other person as we see them and interact with them)?
What I am babbling about is the fact that being married to someone, having a partner, kids, etc…. all involve open hearts and compassion and all the rest of it, but at the deepest root level, can we ever 100% love them? Can we ever 100% love ourselves? Thus I wonder if true love is really only possible within the inner state and therefore only for and of God?
In conclusion, we can live with other people and say we love them and really mean it, but without being completely “awakened” then we are merely talking about theories while living out something completely different.
As we say in yoga class, “Namasté”, which is supposed to be translated as “May my God-self recognize your God-self”.
Perhaps that is the best way to sum it all up.
Namasté!
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Oct
25
2009
I have high hopes that most of you out there are doing very well and have your health to count on. Funny how I DIDN”T take for granted my health prior to cancer. I actually shared my gratitude for great health through prayer and meditation quite often. It was not uncommon for me to give thanks for being so physically active and strong. I know the old saying it supposed to come out of my mouth, but truth be told I really have appreciated my health for a long time (especially running a bodywork practice whereby I taught yoga students and massaged people for a living and saw what poor health does to a body, and mind! Trust me, I massaged some neglected, starving, decaying bodies! Whew! I still have some foot stink that I can’t get off of my hands because some clients had SUCH awful care of their feet! The stories I could tell . . . ).
Anywho, I am doing OK. I am dealing with pretty intense spells of pain right now as apparently the radiation dermatitis has caused several places on my legs, arms, and back to “tear open” and create these white spots about the size of pocket change. They are what I call “white hot” pain as anything that touches them makes me involuntarily cry out. Ouch!
One negative aspect of being in this nearly constant pain is that it makes me want to eat more and eat sweets a lot. You can imagine what feeling bad and depressed is like, but add on top of that nearly 24/7 (yes, even during the night I wake up several times in pain) of skin pain and you feel like just ONE MORE cookie could keep the bad feelings away for just a little longer. But we all know the ending to that story . . .
In addition to those white spots, my fingernails are continually breaking apart, chipping, and and cracking. My right foot arch still (after over 9 months) has cracks and cuts in it that prevent me from just walking normally on it.
I will have to say one vastly improved condition are my eyes. I put in the serum drops at least 3 times a day plus the restasis drops and where my glasses with “eye hydration cups”. All together my dry eyes are mostly a thing of the past. Thank goodness, because I could not even really see prior to this as I had to squint to the point of closing my eyes most of the time with the GvHD in my eyes.
My vitiligo is still present, although I believe improving all the time. I still go to photopheresis two days every other week for about 3 hours each. My scoleraderma is still pretty tight in linear paths on my arms and inner thighs, although it does seem to be getting softer with time.
My lips and mouth are still very tight and dry, although no where near the painful, bumpy condition they were several months ago.
I still have red bowel movements if you know what I mean from large rectal fissures going on about 6 months now. And they said it would take a long time to heal. Good grief!!
My legs look pretty beat up and horrible given all of the cuts, knicks, sores, etc… They essentially do not heal from any knocks into objects and the like since the drugs I am on prevent healing. That’s the irony; I am taking prednisone to keep me from life-threatening GvHD that at the same time prevents my new immune system from working at 100% and thus allows opportunities for infections from lack of healing and thus putting me potentially in a life-threatening situation. Can’t win either way!!
While I still have my sense of humor, I admit I have been tired of this whole thing lately and really want to despereately move on with it already. Come on folks, school’s out and it’s time to play now. Oh how I wish I could just snap my fingers . . .
Oct
23
2009
(Previously posted)
Will traditional educational settings like high schools and colleges have to adapt to the ever increasing reliance on Internet knowledge as the primary reference tool? Given the suspect integrity of the Internet for correct and honest information, will educational houses get bogged down in having to “un-educate” their students from their years of Internet exposure and then begin again with the correct information? How will this effect the Web 2.0.0.1 generation?
Oct
23
2009
I was interviewed by a New York Times reporter, Andy, about the recent release of the first FDA approved drug specifically indicated just for PTCL called FOLOTYNTM (pralatrexate injection) by Allos Therapeutics, Inc.
We spoke for 30 minutes and if the article is published, I will share it here. Many thanks to Judy Jones of the Cutaneous Lymphoma Foundation for entrusting me to represent the PTCL patients that she knows.
Here is information about the release: http://www.medicalnewstoday.com/articles/165430.php.
It is wonderful news that we finally have an option now for our unique condition, although the rarity of our disease makes this therapy cost upwards of $9,000 a week! I shared with the reporter that while it is obviously an exorbitant amount, I do understand enough of the nature of drug development (given my work at a medical education company) to appreciate the need recoup the cost on the R&D of a rare illnesses. (Of course it would be nice to have it much more affordable, but only time will tell).
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Nick's Cancer Photos
My Cancer Photo Slideshow My last 3 and 1/2 years of lymphoma management, treatments, and recovery onto Graft versus Host Disease.
Nick's Cancer Blog
Last year and a half blog on my Cancer, Stem Cell Transplant, and Survival on CaringBridge.org
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"Pain-O-Graham"
Here you can check in and see where I am at with regards to daily pain levels. (10 = worst) Google Analytics
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