the Tilt of the Table

My update to the support group this evening as read by Scott.

Hello everyone,

It is always so good to see everyone. This group and everyone associated with it are in my prayers.

Well, slowly but surly, I continue to make appointments and take test and meet yet more nice individuals in the health care industry. Last week I took something called a mid-evil rack of....oh wait a second; they told me that was a tilt-table test. If you have not had the pleasure of one of these, let me add the following words to your vocabulary..... RUN Away!

I jest. It is nowhere near the worst thing I have had to endure. However, it was not fun. Strapped to a table, hooked up the WA zoo, OK, my chest, taken up to 60 degrees and have a rather charming technician try not to snicker at the funny face I was probably making. Here, let’s give him some Nitro and really have a fun time. Trust me, passing out is never fun. Not to me anyway. While safer than normal as I was strapped into place on a table, everyone seems to forget that my neck mussels are severely lacking in ability to support my head when awake, much less when I am not conscious. That is my fault I suppose as I forgot as well and did not ask for a head restraint. After coming back to reality, took me almost an hour to recoup enough to drive home and hit bed for the remainder of the day. Note, side effect of taking Nitro is a server headache.

I see the doctor this Friday..... do any of you know if it is normal for the condemned soul ahhhh hummm patient, to pass out during a tilt table test?; because I sure did and from the reaction of the  inquisitor, ahhh health care technician; I was out for some time.

I have had now most every known test to medical science, not really but I have a pretty awesome resume. Most of my new doctors are always asking me if my medical history is real. I must admit that I get a kick out of breaking in new younger doctors much as was my experience at the Mayo Clinic, but when I have seasoned Doctors in near states of jaw dropping amazement, I confess my little smirk and my Love for all of you for getting me one step closer to the end of all this.

Maybe I am being dishonest, but I really hope there is yet something wrong with my heart and they can tell me to take this pill and you will be better, than not having an answer and in the back of my mind knowing it is probably that damn cancer yet again.
I am tired. I am hurting most of the time. I can’t do a lot of the things most people take for granted. But I come to this table every month, and I am blessed by the courage and strength and the sheer desire to live that each of you bring. I am so blessed by each of you and I really wish one meeting I could share with all of you that I was OK and not having my fingers crossed behind my back.

Hopefully, it is nothing. But hay, at least I will have yet another medical related bill to pay. I guess the alternative is a burial plot.

I love you all and I pray that God will bless each of you.

A catching up; of sorts:

Letter read last night at my Support Group by Chris.

Hello everyone,

Since the last time we met a lot has happened in the world. The earth has moved, water has rose, volcanoes have blown and the Queen (God love her) jumped out of a helicopter!

I will be honest with you all; I have not been feeling well for a few months now. I have been blacking out and I have fallen a few times. I have had several neck thingy bobs, which is technical jargon for Carotid Duplex Ultrasound and MRi. See, neck thingy bob is much more understandable. Blood work up the kazoo and I am in the process of meeting and breaking in several new to me Doctors and helping put their children through college or paying off their mortgages. I am sure they will get use to me soon but I always have fun with health care professionals.

They are always so nice and that’s OK, but after a few minutes going over my medical history they tend to become rather attentive. They quickly realize that the same- o same- o did not just walk in. I tend to have the upper hand in all areas except billing. No one wins that battle.

The long and short of it as of this evening is I don’t know. Tests are still being done and evaluations are still being drawn. May be next month I will have some real news to pass along. Until then, I will continue to uphold my part in the doctor/patient process. (And have a little fun with these guys.

My mom is still with us. It is a slow and rather agonizing process. My prayer every night is that I may outlive her. She is still a blessing to those she is around and I know that inside, she is at peace.

I am not sure about all of you, but I am rather tired of this heat. As we move into September I know the hard part is behind us for another year but this dry heat crap is getting old. I tell friends to turn their oven to 106 and stick their head in that. IT’S A DRY HEAT!

Other than that crap, life is very good and I have so much to be thankful for. Why just last week my daughter in law texted that she wasn’t sure how it happened but I was going to be a grand-father yet again. For those counting; this will be number EIGHT. Damn I’m old!

Issue number 12 of the Justice League with a cover price of $3.99 is selling on e-bay for $25.00. Ha, I got mine. For details, consult Chris!!

I continue to LIVE my friends; I truly hope you don’t mind. I love you all and I wish and pray for you all - happiness and good health.

Be strong for each other because both Cancer really sucks.

Per G.G., Chief of Ordnance

This is the newsletter I sent to my support group this evening and servers as an update on my current condition.

Hello Everyone, Time again; for that monthly e-mail nudging you to attend another regular meeting of the Support Group. That’s OK, trust me when I suggest there are many worst things one could be bugged about. This month, we are talking May already, will be an open meeting and a time to catch up with each other and enjoy one another’s company. This month we meet on the first day of May at 6:00PM. As per our normal course of events, this gathering will be at the Pima County Medical Building which is located at 5199 E. Farness Drive. I hope everyone who attended the show last week had a wonderful time. It is always a raucous event and I for one really enjoy the opportunity to see us all beaming with laughter. The figures are currently being double checked and there should be an accounting of how we did with the ticket sales by Tuesday if not before. I will distribute that information to everyone once I receive the final tally. This year I sat upstairs and had a wonderful time and got that milkshake I promised I would have. I will admit that I was unable to finish it all, but I sure tried too as I enjoyed the show. I hope and trust you all had an enjoyable evening as I personally feel that humor, as well as a positive ‘spiritual’ attitude are important to OUR continued health. As is my usual writing demeanor; here comes that jaunt into the past which I hope in some way puts you in a mood to remember to attend this coming Tuesday. The Adventures of Huckleberry Finn was published in 1884 in England and 1885 in the United States. At the very beginning, prior to chapter one, the author of the literary work, Mark Twain pens the following warning: Persons attempting to find a motive in this narrative will be prosecuted; persons attempting to find a moral in it will be banished; persons attempting to find a plot in it will be shot. BY ORDER OF THE AUTHOR Per G.G., Chief of Ordnance Now, with all due respect to Mr. Clemens; I wish to proctor just those very ideals in order to entertain, conjoin and exhilarate each of you to continue to take another step, to accept a new day and enjoy yet one more moment as a living human being. A few weeks ago, it became that time once again to become prostrate myself before my insurance provider and humbly plea for the preferred medical procedure which MY medical professional of choice would like to have performed. YUP; time again had come for a PET scan. HA, DENIED! So, in a time when doctors are forced into doing more, accepting less and still keeping a semblance of a bed side manor; my doctor appealed and got the blessing for a Chest CT. (Which of course the over burdening co-pay still falls upon me.) Trust me; I do not in any way look for a hand out when it comes to my medical coverage.  I have no desire to sip from the cup of society. Damn it, I have had, have maintained and will continue to ascertain insurance coverage. Once again I will turn to a quote from the character Eugene Kittridge in the first Mission Impossible movie: ‘Dying slowly in America after all, can be a very expensive proposition.’ `OK, enough of that. Well, during this time I decided to take a day trip and come to peace with the fact that all this stuff is for the pondering of those of a much higher pay grade. There is little I can do about any of this so along with a good friend and his wife, off to St. Anthony’s Greek Orthodox Monastery I went. Having already learned to live a somewhat ‘monastic’ lifestyle, I decided I would go and observe the ones that live it correctly for some inspiration and calmness. I am a great believer in prayer and there just isn’t anywhere as good for me as St. Anthony’s to walk in silence and come to grip with my Lord. I hope you enjoy these few pictures and if you have not experienced a trip to the Monastery, please try and fit a trip into your schedule if you can. I find it most refreshing as to my Faith and fortifying for my Soul. There are some truly spiritual places there at which to pause and pray for help in becoming whole. The point of all this, the results of the Chest CT were sent to Dr. Manning and of course Jan took time out of her busy day to e-mail me and very happily let me know that my CT was clear and my chest was in great shape with no signs of cancer. I think the exact message from her was – “YAY!!!!  Your scan is supercalifragilisticexpialidocious! “See, even the Lord understands supercalifragilisticexpialidocious. Well, that’s it for this newsletter and I hope to see everyone this Tuesday evening and I long to hear everyone being in high spirits and good health.  Be strong everyone because Cancer does suck.

March is here

(Delivered to my support group, read by Scott)

Hello Everyone,

I truly hope everyone is doing wonderfully.

I really did have a great time with my daughter and her family. I smiled for days.

However, back to the real world I came. Mom has had another series of seizures and I have been dealing with that. These things take such a toll on her physical well being and of course confuse the heck out of her and we all are back to step one.

Time for me to start gearing up for poking and prodding. Dr. Haung's office called and he says it's time for him to have a look see. I am sure Dr. Manning and Dr. Stratigoulras are not that far behind. We are coming up on the year out Pet Scan ordeal. This has historically been the scan that has disclosed further cancer activity. I ask for all of the prayers and good thoughts that you can send my way. Just once; I really would like this (one year) scan to be clear.

I have been working really hard on eating. After feasting on formula, chocolate candy, fruit smoothies and frequent stops at Dairy Queen; I know, a lot of you would trade for my problem, I am happy to tell everyone I now weigh 143.5 pounds. That is the most I have weighted since 2006.

I continue to be as active as I can be and I try each day to leave this world a bit better off than I have found it. Some days, it is just by a smile, but that's one more smile that wasn't on the earth yesterday. There are so many things that bother me, both here and around the world. I spend a great deal of time in prayer; I can only hope that it helps just a little.

It is so good to see everyone and I just hope you all the best. Life is very good for me even though it has many worries for me to deal with. I love you all as I continue to mark off each and every day till December 21st. I am not sure that any winter solstice has been so anticipated as this one. I do so intend to sit on my patio in my chair and just smile. Smile because on that day I will have smitten the Mayan demons and I shall be rewarded with yet one more morning to know each and every one of you wonderful people. Pole shift ha. I have stared the black maw of cancer in the face and because of my faith in God, I shall fear no evil.

Be good and kind to the world everyone, and be strong, because cancer sucks.

Why would I need 4 layers of coats?

 

Delivered last night and read to group by Jan.

Hello Everyone,

As always, it is just wonderful to be here with all of you.

I have finished moving and must let you all know that I love my new place. it is much newer, much smaller and a whole lot better for me. The views from here can be extraordinary at times and when the weather is in form; it is downright weather channel picture post card beautiful.

I wish to thank everyone who have shared with me their feelings, thoughts and observations on the web site. I am also thankful for the kind words passed my way regarding the results of my efforts on maintaining it. It is a pleasure and I am more than happy to do it. I run into a bump here and a dip there but I hope it is getting better. Hopefully with the coming of the new year, I will be putting yet more time and effort into it.

On a personal note, I must be honest with everyone. I continue to have pain in the evenings. Sleep is hard to obtain and maintaining it is a joke. I am up MOST, not every, night and it is becoming an irritant. I hurt, but this is in addition too the cancer pain I deal with. I hurt from my toes to my head. It is similar to the extreme joint pain one gets with a bad case of the flu; but it's not the flu. I think it is the price one pays for not being 19 years old. I long for a world where Ponce de Leon had found that darn fountain. Oh well, I 'endeavor to persevere.'

Other than some pain, I am so blessed and better that others in this world.

Now for the good personal news. I will not be with you all next month at the meeting. I will be across the river from Minneapolis/St. Paul in the little town of Hudson Wisconsin. For the first time since 2003 I am going out of town somewhere that isn't a Hospital. Now, not being the brightest color in the crayon box, I am going in February. It just worked out and I will be with my oldest daughter and 4 grand kids there. The youngest, my grand son, I have yet to meet. To say I am excited is an understatement. I will be flying up on February 3rd, spending my birthday with them and come back home on the 8th.

I ask that you all say a prayer for me at this time. The boys are going to check in on mom. It's only for six days, but in my life; that's a long time to be away from her.

Well, that's pretty much the only gossip I have to share with everyone and I just hope you had a really Happy Holidays.

Enjoy each other, make every effort in the world to be kind and stay safe.

Be strong , because cancer sucks.

An the survey says......

Image via WikipediaI need to catch everyone up with regards to my medical status as of this week. Besides moving, I also had my follow up Pet Scan to my latest round of radiation to my lung. If you have known me for a while or followed my blogs you know what a tenuous time the waiting is. This time was no different but at least I had the moving as a distraction.

The call came first thing last Wednesday morning. My long time Oncology nurse and friend was on the other end and was just busting a smile I could see over the airwaves. The news was good. The treatment showed no uptake and no severe scarring issues. Also, there was no uptake in the throat which my ENT doctor was concerned with. This is real good news and I am very excited to be in good condition currently.

I have been here before. The initial follow up Pet Scan has historically been clean only to come back at the year point. I am staying guardedly positive and not thinking about the cancer so much but in the back of my mind I have to wait until the second scan which will be in about 6 months to finally feel secure in what my condition really is. Such is life.

To be honest, I get tired very easy and still have the pain catch up with me in the evening but at least for now; there is no ‘blackness’ inside me eating away at what is left.
I am alive and I give thanks every day. If you are of like persuasion, I ask that you continue to pray for my health or at least have good thoughts. Know that I have all of you in my prayers as well.

Still living out of some boxes but I at least see the light at the end of the tunnel. In the words of Chief Joseph of the Nez Perce, ‘I shall no more move, forever.’ – Well, sort-a something like that as I have no desire to ever move again. I just hope that is the case. It is very pretty up here and it is amazing how just a little altitude into the foothills make that morning cup of coffee on my patio taste like none other. There is a wonderful chill in the morning breeze and I just watch the clouds hug the mountains. I am happier here than in my previous home though it is much, much smaller. Ah, I needed to get rid of most of that junk anyway. I was a notorious hoarder of anything and everything I have every owned. It was hard, but so much has been either lovingly placed in the capable care of the ‘dump captain’ or passed along to several charities here in town. It was hard, but I have let go of so much.

OK, I wanted to let my friend and acquaintances that follow me here that all is well and we just need to wait for another 6 month scan. Some pictures of the new ‘hovel’ coming soon; I promise.

Who the heck is Ethel?

 

As read to my support group last night by Scott

Hello everyone,

As always, the evening of the first Tuesday of each month brings a joy to my heart. Like a young man wrestling with the prospect of falling in love for the first time; the anticipation of yet again being amongst friends is as palatable as the porch scene in the rain between William Hurt and Kathleen Turner in the movie Body Heat. Well, may be not that titillating however I do get very happy and appropriately excited to see each and everyone of you.

I yet again started Radiation treatments this morning for the fourth time. It is rather disappointing at how accustomed I have become to that table and that rather apocalyptic mustard yellow sword of Damocles which revolves around my body. It has become an old companion which brings depressing invisible waves of destruction which in some hysterically ironic way; prolongs my live. Go figure.

As has become my accustomed duty on that bed which I just know came from some Hilton Hotel which Paris somehow decided she could live without (read that as hard as heck); I close my eyes and think of blessings I have enjoyed in my live. My grand kids come to mind first, followed by their parents followed by my mother and father then you guys. In the end, after all the crap, after I take tally and account of what is of any significances in my life; that's about it. Add to that list my belief in God and my church, I quickly realize laying under the revolving science fiction Ray Gun charging forth to slay my disease; those are the only importance I truly have. You guys, each of you and others I know and love as family and friends; you guys, you are my treasure and the glimmering gems which get me out from under that stupid mustard yellow, stupid contraption. It truly is ironic to me how something I really despise gives me the opportunity to say thanks for and show a little appreciation of that list of wonderful people who give me such awesome strength.

No, radiation treatments aren't fun; but I guess they beat chasing after wayward women till my passing from this old world. May be (?)

My mom is still with me. She has no real idea, beyond the faint fact that I am someone she knows. Most of the time now she is asleep, yet I sit next to her on the couch and hold her hand. I take calm warmth from the fact that I know she is mostly at peace now and her sprit is for the most part calm. Like time on that table; "this too shall pass."

Today is my oldest daughters Birthday. I told her on the computer that I loved her this morning and life is good. In the end, it truly is OK.

Thank you to each and every one of you for being in my life, for bringing strength and putting up with babbling on. It's just that I love you all so much and wish you all well.

Be strong my friends, because like the Fields of Asphodel; Cancer Sucks!

PS. for those of you who know:

Billy was a mountain and Ethel was a tree growing off his shoulder.

Do I really need to comb my hair if today I ware a hat?

 

E-mail sent to my support group this afternoon.

Once a man has seen, he can no longer turn his back on it. Never pretend it doesn't exist. No matter who orders him to look the other way.

We do not do this thing because it is permitted. We do it because we are compelled.

-Rorschach from Watchmen/ Alan Moore

Hello everyone,

It has been a while and I have been remiss in my sharing with you for some time as to my place in this world. I shall endeavor to make amends for this is my usually and only realistic way; by the written English language. If you are so inclined to read father, I trust you will be more the enlightened as to my current state. If you choose to end your reading at this point I bid you farewell and my best to you.

If you have known me for any length of time and have been so kind to have read any of my previous communications with the members of this group, you probably know that some sort of historical perspective will be offered as my device of choice to enable us all to consider this moment in life to reflect and learn and question and endure. You shall not be incorrect in that assumption this time as well.

However, firstly; let me express my continued love and respect for each and every one of you. I continue to offer no apologies for my endearments to each of you. All of you offer me strength, encouragements and heartfelt embraces of endearment. Never has such a group existed (in my humble opinion) and I again proclaim my pride of membership in this 'embracement' of support. Thank you.

Some of you may be aware of Maximilian Kolbe (1894-1941), others of you may not be. Either way, please indulge me this small retelling of his story in order to ponder what we have seen and what we are compelled to do. Maximilian Kolbe was a Polish priest who provided shelter for thousands of Jews in his friary. He was arrested and imprisoned by the Gestapo in Auschwitz. When a fellow prisoner escaped, ten other prisoners were to be killed in reprisal. Lined up and helpless to anything but their impending fate, one of the doomed began to cry out, "My wife! My children! I will never see them again!" At this, Maximilian stepped forward and asked to die in that persons place. His request was granted and it is attested that he lead the fellow men in song and prayer as they awaited their deaths. That is where this wonderful mans life ended and is somewhat a known moment in history especially amongst various Christian religious institutions.

Some back-story if you would allow.

Maximilian had also lived in Japan and had founded a monastery on the outskirts of Nagasaki. Four years after his martyrdom, on August 9, 1945, the atomic bomb was dropped on Nagasaki, but that monastery miraculously survived.

We as a support group are in need to ask ourselves some questions. It is apparent that we need to take our place in line. No my dear friends, our nor my quandaries are anywhere near as dire as Maximilian Kolbe faced. And I thank Divine Providence and the United States military for that. That being said, it is now time that we all search our inner self and ask is there something I can step up and be of service to this assemblage of austere fellows. (?) I can not answer the phone nor make the call. I can no longer stand before any assemblage and preach our cause. But, I can use the written word, I can stand, I can be accounted when it comes time to be strong. I every day offer up prayers for not only individuals in this group, I also offer prayers for our collective blessings as a party of like caused. I give you all as much support as I can and I will answer any desire that may be tendered my way. I can write e-mail. I venture to ask, would we be serviced by a newsletter. If I can, I will.

I really do not want to see this group simply pass in the night. It is so very important to me and I still have need of it. I have once again become subject to the black plague. It has once again returned to my lung, presently about the size of my thumb nail.

I may be the oddity but I always seem to sense the comings, goings and attachments of Cancer within my blood stream. I seem to never be caught unawares by PET Scan results. I always seem to know, I always seem to feel its ugly presence within me.

This past week, I have had to yet again ask questions and obtain answers. I have had council of old and trusted friend, I have meet new surgeons and new systems of medical care taking. I have discovered yet new insurance codes to be used and denied and fought over and to be a source of, well, just another part of my life. I am never at a loss for finding a way to challenge the medical community.

Tomorrow, I go to start the process for my 5th attempt at having a radiation attack upon my health's enemy. It's funny when you have surgeons review your medical history and expound amazement. Yes, he obtained his co-payment from the Stephen R. Parker Medical Relief Act. (Pun intended) Many is the doctor that has been replenished by my condition.

So, like Maximilian, we and I need to ask questions. Amongst them, what line are we willing to stand in?

Amongst so many, I miss each of our departed fellow members; I cry, I remember and I look forward to a time when this group will no longer be needed. It just isn't that time yet. I still need to know you are there. Please don't give up.

Be strong everyone, Cancer Sucks.

An Old Testament World!

 

{Delivered to my support group last night, read by Mindy}

Hello Everyone,

As always, I find myself in happy awe of all of you. I am proud to be counted among your list of friends and I am impassioned by my respect of each and every story you bring here each and every month.

It was a most amazing January; was it not?

Birds falling from the sky, fish drowning and washing up on the beach. Storms on Saturn. Volcanoes lighting up the night sky in diverse places. WOW, we live in an Old Testament World! And, that doesn't even cover the stuff we are exposed to on the evening news. Shootings right here in our home town, worldwide strange weather and seems like the entire Middle East in turmoil, wait, oh sorry; the Middle East is always in turmoil; but you get the point. What's next, dogs and cats living together? We indeed are living in strange times.

Not so headline worthy, but none the less important to me; my mom fell and hurt her head about 3 weeks ago. I take her to the ER for stitching up and while there, I have a blood pressure drop, fall and break my nose. At least I wasn't far from getting help. Like all face wounds, I was bleeding all over; but, I wash up pretty good and I am better now.

Speaking of mom, she continues to digress in her mental and memory aspects. She requires a lot of attention which seemed the place I have her at wanted to make a drastic upping of the charge for watching her. After a lot of talking with them, they have decided to continue at the same rate at least for now. For those who have been involved with Alzheimer's disease know what I am dealing with. It is hard but also provides for blessing and a special bond between my mother and myself that is a privilege that I will never regret.

As for me, the chest CT was good and normal and all those really good things which we are all so happy to hear. There is a spot which demands that an eye keep attention for any growth; but hay, for me, that seems about normal. I got a very good report from all of my doctors and nurse (wink/wink...Jan is always there for me) and I look forward to the next round of scans in the near future.

How I feel is a different issue. I hurt. I have trouble breathing. I am old. Nothing much can be done. I simply cannot afford to pay for another prosthetic at the current time. Oh well, as a non-producer in this society, I have no tears to shed.

I really hope each of you believe me when I say I much encouragement I get from being in your presence. I love and respect each and every one of you. I hope and pray for us all.

Be strong my glorious friends; after what we have been through...Old Testament type news is just a walk in the park; besides, what can they do; send us to the Nam?

Love to you all and my best wishes.

A pedantic discourse on things in front of my nose.

{sent this morning to my support group}

'And in the absence of facts, myth rushes in, the kudzu of history.'

                                                Cleopatra A Life ....Stacy Schiff

Hello everyone,

I once again find myself with the time to ponder. It occurs; and I confess makes desire to bring finger tips to key board. Oh for the older times when that line would have read; bring pen to hand. Oh well, time stops for no man.

Upon reading the above sentence in the new book by Ms Schiff, I was drawn in my memory to, and I would admit to several occurrences in times past listening to the pulpit, of the use of an amusing story of one William Randolph Hearst and his art collection. I cannot say if this story is indeed factual or if like accounts of kidney thieves, is mere urban legion. I offer it merely as reflective of my thought and without further statement as to the accurateness. As retold by several pastors in my life; (and as included by Warren Wiersbe) it goes something like this:

William Randolph Hearst Was a Billionaire Who Made His Fortune as a Newspaper Publisher. He Decided at One Point in His Life to Invest His Fortune in Great       Works of Art. One Day He Read About a Very Valuable Piece of Art in an Art Magazine, and He Decided That He Wanted to Buy It. So, He Called His Agent and            Sent Him All Over the World Trying to Find It. The Agent Searched for It All Over the World, But He Couldn’t Find It.

            William Randolph Hearst Insisted That He Find the Piece of Art; So, He Sent Him Out Again. Finally, the Agent Returned and Said, "Mr. Hearst I Have Found the          Valuable Piece of Art You Have Been Searching For. Mr. Hearst Said, "That is Wonderful Where Was It?" Then, the Agent Said, "It Was in Your Own Warehouse             Sir;      You Bought It Several Years Ago."

It has been stated at past meetings that WE as a group are in need of speakers. My friends, as I have no voice, I ask that you please indulge me and my desire to speak to this issue in the only manner I possess.

I personally see several Doctors on a regular basis. I shall upon my next visit with each, ask if they would be interested in addressing us. I know some of you are in the medical field and have access to reps from a verity of companies which may be interested in coming for a visit. Heck, I would indeed promise you all to behave most civilly in the presence of an insurance reprehensive. Honest, I would behave. I for one am most appreciative of anyone whom would take of their time and knowledge and share with us. It doesn't even really have to be medical or cancer related. There are many, many subjects which I personally would think be of interest to US as a group. I dare suggest almost any subject could somehow be germane to all of us. Give it some thought! One never knows unless one asks.

On this subject, I have a question. Do we as a group give as a token of our appreciation any sort of gift for speaking to us? In times past and in my other lives, I would always present a token of thanks. Sometimes in the form of a pen with a logo on it. I know that one of the most cherished mementos I personally received (in that past life of mine) was a simple index card of thanks signed by all in attendance. I hope we do. If not, I would ask that we do whatever is correct and governing to get something. It never has to be big nor expensive; it just should be honest.

That being said, I wish to make the following observation to everyone. I so enjoy and relish the time we spend in just catching each other up. I hope and desire that we always have and make the time to hear from each other. Like a warm cup of coffee at the breakfast table, we as a family must come to the meeting table with support. Lord knows I so need that. I would be willing to venture that most of the rest of us do as well. There is something permanent about the LOVE of true friends, those enjoined in battle.

I must tell you that I look forward each month to commune with each of you. I give thanks to Providence for our being able to do just that. Come together, tell stories, joke, cry, encourage and stir into a better life; if only in the moment. I find inspiration in each and every one of you. You, all of you; make my life better and I long to hear of your struggles, your victories and your blessed and beautiful .. every day of life. I am almost embarrassed to convey that those moments spent going around the table and listening to each of you is a highlight in my life. I am so proud and amazed by the breath of wonder which sits around me each time we meet.

Please, nothing I say is to be mistaken as a desire NOT to have guest speakers. It is not. I think it is important that we are exposed to and are educated by the current state of medical advance in our shared concern. This is a good, noble and important part of our healing process.

I just, also feel, it is so important that we not forget to enjoy in the victories and yes, setbacks; of each other. I by no means would ever for one moment pretend to know what was in the mind of Mike upon creation of this group and the wonderful job done by all of you who have been here from the beginning. I can only announce what I gain from what you all have so bravely done! You have given me friendship. I cherish it so highly and I desire to see it preserved. My hope and desire is that we never get so busy, or caught up in all that each of us face daily; that we forget what we all ready possess in our own warehouse: each other.

I hope to see each of you at this next meeting and I wish you all health. Be strong.

A prolegomena to Thanksgiving; an epistemological look at my caloric intake.

 

And why I am thankful to be alive.

On this wonderful day and because more than a few have asked, I thought I would share with all how I consume. I off this accounting as merely an answer to the question of how and to let all of you know how blessed I am and how truly thankful I am that this is a blessing from God as the alternative would be starvation.

 

I need a couple of things to begin:

A can of food which I purchase from Walgreens in one of three flavors, a cup and a syringe.

Today, for Thanksgiving breakfast I chose Vanilla. Just because.

Give the can a good shake, nothing like lumpy vanilla. Yucccky!

Into that cup it goes.

Purging my tube, nothing like stomach fluids flying every where. Sorry, but it’s a fact; I have to be careful as it can be very embarrassing if I’m not careful.

Get a syringe full of substance.

And, into the tube, ready to be pushed into my stomach. This is done slowly for several reasons.

Let the line breath and allow the fluid level to find its way into my stomach via gravity….yup; just need to allow for leveling.

After finishing a can, the cup and syringe gets a cleaning flush.

Time for a juicy dessert if you will. For me this occurrence calls for Grape. Oh yummy. Wish I could taste.

Same procedure, have to purge the air and allow for gravity.

Down the hatch; well, down the tube for me. Then, when done, simply rinse and repeat as needed.

I hope this has in no way has thrown a shadow over your Thanksgiving meal. I just thought it was proper to share with you what I do for not only today but every day in order to keep alive. I am so very thankful really. If the ability and procedures of having a feeding tube were not available, I would have no way of eating and would not be alive. It is important to me to be thankful. I trust you have something in your life to be thankful for as well. 

October 2010 letter to support group

 

delivered last night to my support group and read by Mindy

Hello Everyone,

As always, I am so happy to see everyone.

I am good in body and strong in faith. All is well and even the stray $500 bills here and there are nothing more than mindless attacks on my sanity. Paid for over 4 years; now become a bill due and owed by me. I must confess that it is merely a game.

I must also tell you it is fun to send in a remittal for an amount which cost the bill collectors more to process that what is needed for them to stay above the profit margin. I love them and I pray for them, but it's a hoot to mess with them. I am so unafraid that it frightens them I think. Ahh, they don't care. Oh well, I am at peace with the Lord about this and I confess my sin of obstinacy.

I have found a placement for my mother. Please pray for me as I am fighting mightily with myself about this decision. My mind knows that I have made the correct decision; however, my heart screams at me and places a burden upon the strings of being an honorable son. It has been hard to let go and place her care into someone else's hands. The struggle is in my mind I know but the sadness of distance is real in my heart. I can only pray that God understands and my dad in heaven will know the job I did and hopefully he will be proud. I owe both of my parents so much, so much that I could ever repay. They loved me and I am so thankful.

Be strong everyone, now more than ever. The world needs us. Yes, we are all so important and needed by the world at this time. Believe me, mankind is desperately in need. They have not come to the reality that we have to face every day, every second. Life is important and worth living! While the world wants to give up; it is important that we shine a light on the value of the struggle. Do not be dismissed. We have value and I refuse to be a non-producer.

Thank you for being my friends and I am so proud to call you a fellow child of God; if that offends, then I recognize you as a fellow human being.

By the way, my youngest grandson has a tooth. That's officially one more that I have. Life is good and strawberry formula is just fine.

the Hovel is this many, today!

It was three years ago that I started this blog. I had been posting to a web site for a while but was looking for a better, faster way to communicate. I decided to start this blog. It was originally just to be a way to get out some news as to how my cancer was progressing and just to amuse myself and spend a little time.

My very first blog post is here.

It quickly turned to being an open letter to my grandchildren. One big long this is who I am, this is what is on my mind, this is important to me; this is just of interest; here is what I told others about me and hello, I love you; all in one place for them to get a chance to know me. That’s why there really isn’t a single theme or linear approach to this blog. There isn’t one.

When one gets older; being know becomes an important thought with respect to one’s on grandchildren.

As I sit here and write this, my mother, your great grand mother fell a few weeks ago and hurt herself. She is being transferred from Villa Campana where she has been recovering and will shortly be placed into a permanent care home. I am unsettled in this; however, I just can no longer extend to her the care and attention she requires. These past several years have taken their toll own both her and me. I want to tell you that I am tired, but I continue, as best I can to honor my mother and father.

Seems like life never takes a break and keeps coming in all its fury. Oh well, with God’s grace, I will endure. Remember, if it does not kill you; it can only make you stronger.

As you (any visitor) go through any post here, know that you are most welcomed. I have meet some amazingly wonderful people via this blog and the internet. You are encouraged to drop me a note, leave a comment and what I most hope for; that you find encouragement to live each and every day to the best of your ability. Just remember, you are opening and envelope and taking out a letter from me to my grandchildren. It’s OK, you are welcome to read along and hopefully enjoy the journey. I pray each and every day they will. I never grow tired of telling them that I love them. I just hope they remember that I was here, that I tried really hard and I want nothing but their happiness.

God Bless you guys. I really enjoy talking to each one of you.

The value of just one more day

 

{an e-mail sent to my support group this day}

Hello Everyone,

What a wonderful time I had at our monthly meeting the other night. Thank you all for the warm hugs and hardy handshakes. The smiles and questions of concern.

I have a story to relate:

This morning my oldest granddaughter came running into the house tears flowing and words struggling to be released from her mouth. Her usual smile and happy nature had been offset by something terrible.

Of course, the first thing I did was hold open wide my arms and bend down to hold her as safely and as warmly as I could deliver. Her beautiful red curls were all in dishevel madness' and her normally radiant face was ashen of some miserable, unbearable condition no one could ever, ever make better.

'Honey; what in the world is wrong?' is all I could manage to offer after the holding and gentle swaying back and forth of her little frame was at an end. As I held her away and attempted eye contact, 'It will be OK; I promise you.' was given as an enticement for information on what was the cause.

Stuttering from an over abundance of emotion and blocked by a fit of coughs , 'I.... Grandpa... I.. love you so.....much', came out of her mouth but was not to abate her tears.

After another application of the hugs and reinforcements that only a grandpa can provide to a tender granddaughter, I finally got her to calm down, breathe and tell me what the cause of the torment that had come into her life was.

Mustering courage and strength from way deep inside, she began 'It was so important to me; it was the most important thing you had ever given me. Grand pa, the book of stories you gave me, the wonderful tales of princesses and baby deer and little wooden boys ate by the whale; that one' I could see the tears forming and the breathing becoming lost to the sorrow in her mind; ' I lost....I lost it....I'm so sorry, it must have cost a million dollars Grand pa; I lost the book' followed by an open spigot of tears and sobs.

Relief finally in my mind, it was a lost book and nothing of what could have been which had been bombarding my mind. I fought the urge to laugh at the release of my own emotions of the what if variety, but caught myself to not offer a disparaging adults view of what constituted the end of the world to such a beautiful child. I applied one more hug and finally managed to get my old bone into such a position that I could take a seat on the floor and meet her gaze on an equal plane.

'Oh sweet heart, trust me, it will be OK. We can always get another one for you.'

'But grand pa, mom has told me it was worth a be jillion dollars and I was to never let harm come to it. She's going to kill me.'

Then she asked a question which gave me pause and forced me to give an honest accounting. Fighting back tears and rapid breaths, 'Have you had something you owned and thought it couldn't be replaced if you lost it?'

Holding her back from me at arms length and giving myself a few seconds of time I offered her the most honest answer I could; 'Yes, yes I have and I know exactly how you feel.' To which she gave me a look of anticipation and an oblivious desire for me to continue and tell her what it was.

'Sweetheart, you know how grand pa is sick right? and how I always have to have the Doctors do test on him?'

'Yes'

'Well, just this morning I got the results of my latest test.'

'How can that be the most important thing in the world to you grand pa? You have test all the time'

'I know I do baby, but just this morning, the doctors called and told me the results of my latest test. The cancer I have, you know, what makes grand pa sick sometimes?, the cancer, well, there is no sign of it anymore.'

I could tell by the squinted eye brows and look of questions not yet formed fully, she asked 'why is that worth a be jillion dollars?'

I smiled and held her tight and now found that I had to force back my tears and my loss of breath.

'Because my dear; it means that I get to spend more days with you, more time to watch you grow and I get the joy and happiness of just being with you.'

This time, we both held each other and then laughed with each other as only grand pa's and granddaughters can. Somehow, the lost book was forgotten and the death penalty sure to be imposed by mom had been pardoned.

No, this didn't occur anywhere other than in my mind. Well, except the call I did receive this morning and I now wish to share. I had the Pet Scan and guess what? My lungs, my throat, my whole body is clear. Oh thank God, once again; at least for right now, for a little bit of time, I am cancer free. I have yet a few more days to watch my grand children grow. I hope you pardon my little made up want and desire to be with my granddaughter. It was an honest desire of my mind expressed to you as the best way to convey my happiness and for me to make something so insignificant given the horrors in the world today, a matter of enjoyment for you to ponder.

Never take one moment for granted and never ever underestimate the value of a be jillion dollars to a little curly haired girl who now owns my heart.

I hope my good news finds you all well, whole and with good news as well. I am blessed and never think for one second, I don't know it.

Be strong my friends, as Cancer truly Sucks....

Update delivered to my Support Group last night.

 

I was thrilled to have Mindy read this to the group last night:

Hello Everyone,

I wish to tell everyone how happy I am to be here. I am blessed to be in your presence and I get so much love and encouragement from all of you.

I am OK for the most part. I get older each day and I count that as a gift from God.

I wish to let you all now that I have been so frustrated lately, frustrated to the point of tears. Insurance and Insurance Companies had become the Antichrist to me. I had become angry and worst, I was unashamed to let the world know it. Just as I was about to cave in, the other night, I got on my knees and just gave it all up to my God. Well, guess what? He took it! The next day, one of the last irritants (read as a deigned claim) was worked out. The next day, the new fangled insurance do-hickey of a company sent me a letter stating that my Pet Scan was approved. Now, it's not a perfect world, however, it is now better, thanks to the blessings which I choose to give credit to all of you and to my personal relationship with God. Thank you all for the good thoughts and the prayers. I still expect aggravation but I have found a solution; I have decided to accept Insurance Companies for what they are.... and I offer these sage words of wisdom which are not my own:

Do not try to teach a pig to sing. It wastes your time and annoys the pig.

Mom is doing better but will be in Villa Campana for another week or so. I would be lying to say I have not taken advantage of her being in the care of others. I have gotten so much done, but you know what; even though I see her every single day, I miss her so much.

I must say that all of us; you, me; all of us are important. You matter; we matter. Wake up every day and give thanks. Lord knows I do.

Thank you all for being my friends and I love you all so much.

the Hovel is this many, today!

 

It was three years ago that I started this blog. I had been posting to a web site for a while but was looking for a better, faster way to communicate. I decided to start this blog. It was originally just to be a way to get out some news as to how my cancer was progressing and just to amuse myself and spend a little time.

My very first blog post is here.

It quickly turned to being an open letter to my grandchildren. One big long this is who I am, this is what is on my mind, this is important to me; this is just of interest; here is what I told others about me and hello, I love you; all in one place for them to get a chance to know me. That’s why there really isn’t a single theme or linear approach to this blog. There isn’t one.

When one gets holder; being know becomes an important thought with respect to one’s on grandchildren.

As I sit here and write this, my mother, your great grand mother fell a few weeks ago and hurt herself. She is being transferred from Villa Campana where she has been recovering and will shortly be placed into a permanent care home. I am unsettled in this; however, I just can no longer extend to her the care and attention she requires. These past several years have taken their toll own both her and me. I want to tell you that I am tired, but I continue, as best I can to honor my mother and father.

Seems like life never takes a break and keeps coming in all its fury. Oh well, with God’s grace, I will endure. Remember, if it does not kill you; it can only make you stronger.

As you (any visitor) go through any post here, know that you are most welcomed. I have meet some amazingly wonderful people via this blog and the internet. You are encouraged to drop me a note, leave a comment and what I most hope for; that you find encouragement to live each and every day to the best of your ability. Just remember, you are opening and envelope and taking out a letter from me to my grandchildren. It’s OK, you are welcome to read along and hopefully enjoy the journey. I pray each and every day they will. I never grow tired of telling them that I love them. I just hope they remember that I was here, that I tried really hard and I want nothing but their happiness.

God Bless you guys. I really enjoy talking to each one of you.

Denial est non a flumen in Egypt!

 

The following was delivered to my support group last night and read by Mindy.

 

Hello everyone,

I hate to be not as positive as I normally strive to be, but as the poet of old said... I think I have outlived my insurance companies desire to provide coverage for me any longer.

Years ago in a different life I worked and toiled and I paid my bills and I tried to put a little away for a rainy day. I strove to take care of myself and when I could I even tried to help others. I miss those day.

Several weeks ago now, the latest games started again. Attempts at discouragement and coverage denial puzzles laced with language worthy of a Harvard Law Degree or at the least; a tomb designer in ancient Egypt, began to occur again and again.

What has been most amusing is the rapid coverage acceptance / coverage denial flip flop letters which cross in the mail and are down right rude in nature. It's like in the Weimar Republic when the workers was paid every two hours to keep up with the continued escalation of prices. Only with me, it is keeping up with the denial of coverage.

As of this evening, I have had to cancel 3 doctors follow up appointments, one Petscan and any attempt to feel comfortable about my current status as a citizen in this country. There is also continued unpaid bills which were for service authorized by them.

Yes, I jest; however I am frustrated and I fear that my providers are committing murder by denial and I am their target for improving the bottom line.

As the old British general said in his thick accent, 'There is no tanks in War!"

I confess that I am now a non-producer and I do suckle from the troth of kindness from the good people of this great nation. I struggle with this fact every day. I am part ashamed and part confused. However, I tried to do the best I could when I could do it. I am tired and the insurance companies continue to trifle with my care.

Well, as I have stated before, my goal in life is to live one day longer than my mother. I hope she lives forever, that way I will bankrupt them by the sheer volume of stamps they have to use on all those confusing letters of denial.

Please forgive my ramblings. I love you all and I get strength and nourishment from knowing each and every one of you. You are my friends, my loved ones, my support group and I acknowledge you all as fellow human beings.

Every day I feed the birds

sent this morning to my support group

Hello everyone,

As always I trust and pray you are both well and whole. I attempt each day to offer each and every one of you a thought and a prayer and implore the Lord for your health and well being.

One of the most striking things in my current life as a person with disease is how reliable I have become on menial tasks and there importance to me. For me, my day is filled with little easy to marginalize task for my mother. Then the little things to keep our house in a somewhat fit and running order. Every once in awhile, I get involved with what I refer to as playing the game. Yes, I have to battle with all my might against the barbarian at my gate known as insurance. Never has one man paid so much and realized so little in response. I will drop it there as my continued fight for health care payment is not the purpose of my correspondence with you today.

I am sure that most of you, like me, live in a noisy world. Not necessarily the volume but the sheer amount of noise (defined by me at this point as distractions to) our need to just think about things. There are radios, TVs, computers, iPods and iPad, gaming systems, the phone, the laundry, working on the car, on and on; all with a noise level all their own. I sometimes would offer all the stars in heaven for a mere moment of silence.

I have a new found appreciation for the importance of the menial, everyday tasks in our lives, and how they provide wonderful opportunities to let our minds loose to roam, explore, and process.

Don't confuse this with a time of prayer and inward examination. I'm speaking about eliminating the background in the everyday. I ask that you think about creating silence. While our hands are busy, take the distraction in the background and eliminate it. You can do the dishes (well, ok, load the dishwasher) without the radio on every now and then. If you have a dog, take it for a walk without the iPod plugged into your ear. Every so often, fold the laundry without the TV blaring at you. These are times we can enter with no expectation  other than having no expectation. We all have treasures waiting to be found in the silence.

In the book The Quotidian Mysteries by Kathleen Norris, she encourages us to treasure rare moments of solitude and silence and to avoid distracting ourselves with television and the like. The menial tasks of life, she says, can be "islands of holiness" in an otherwise chaotic and noisy life. This has been hard for me to get used to. I'm constantly downloading podcasts from iTunes and listening while I go about the task before me. I have the TV blaring while I putter around the house while I straighten. But I'm trying to open up some of these times to the silence.

As someone with cancer I find these times increasingly important. I need this time to create, to solve to clarify my position on matters dealing not only my health but regarding the multiple inputs on just how to obtain that health. On what is important for my family; on me.

I would ask that you maybe look at your daily 'quotidian' task in a new respect. Not as something that must be done in the quickest and most mind numbing way possible. Not as an excuse to multitask ad nauseam, but as a gift from God, a time to allow the silence and discover its treasures.
What will you find there?

This morning as I was feeding the birds I pondered this letter to you and wrote this:

Every day I feed the birds

My morning schedule isn't much.

I read and pray for things I must.

My charge of Love wakes up and thus.

After grace I feed her, to keep her trust.

Because I intake so small

the birds await for their turn to devour.

I get done and out the door, with water and seed their life to live.

When the bath is full, I spread my toil.

I pray that God will see and grace.

They are only birds of the wild.

They make me happy, they repay with a smile.

I desire that each and every one finds and accepts the strength to fight in every way that is right and just and possible.

I look forward to seeing you yet again this coming meeting or hearing from you anytime via e-mail.

Be strong my friends as Cancer sucks.

An, then it was done.

 

Sent this morning to my support group.

Hello everyone,

I hope and trust that this e-mail finds you all healthy and happy. I know that in these days of uncertainty it is hard to be of much good cheer; however, it is better than the alternative, which is merely to accept the tempest which assails us constantly. Try, as best you can, greet each day with chipper and robust glee. If you have to force it, then so be it; I have too from time to time, but do so because life is all we have. Stuff is just stuff. Your soul is forever. You are the only one which is you, there is no other just like you, amongst all of us. How special you are!

I am so happy to let you all know that this past week, I had my latest round of radiation and I am wanting to thank all of you for your prayers and good wishes. God truly blessed me by giving me an option that was most tolerable. Radiation is never fun, do not get me wrong; however, compared to my throat treatment(s); (knocking on wood here); the lung shots were a walk in the park.

"Thank you Lord."

That said, it is still unnatural to be confined and embedded on a table with a multi-million dollar machine {I'm guessing, may be more like hundreds of thousands of dollars} moving around you and killing a part of your insides. All be it a black lascivious death shroud of cells; they still are residing within my body and that is somewhat just downright not a good thing. But hay, there are so many, many worst things in this life one could endure.

Now comes the waiting. I guess the real proof is in the PET Scan which will be coming later. That is always a yucccccky; I have to say it; an insurance issue. Might be in October or with luck, possibly September. Just have to wait and see. Seems like I spend an abnormal aspect of my life waiting for and dreading a PET Scan. Note to self: eliminate this wasted part of my life and replace it with oh, a thick T-bone steak with all the..... darn it, if only I could eat. Maybe a good book or time with my grand kids. That works!

So far, I must tell you all that cancer in the lung is so much easier to manage and endure than cancer in the throat. I am not saying that in the face of anything bad happening to a boastful fooling individual; I'm just saying. Never ask the Lord to humble you, for he will!

I am good, I am well and I am still looking forward to dying as a much older man than I am now. This shall occur by the grace of God and with the friendship, love and inspirations of each and every one of you. Thank each of you for not only the mail I receive from so many of you, but also, for the mere well wished thoughts of so many more. I love and appreciate each and every one of you and please know that you are all in my prayers offered to my God and belief.

Be strong... we have to be, because Cancer Sucks.

Plan B; and the rub….

 

Yesterday, we discovered what lurked behind door number one. Today, we take a look behind the curtain. (A little trip to Let’s Make a Deal TV Land). That’s what it seems like to me anyway.

This morning I met with my Radiation Oncologist. This is the same doctor who has treated me twice before.

He offers me a no knife no pain option called Radiosurgery. Well, to be  exact it is Image-Guided Stereotactic Radiosurgery. Radiosurgery uses a treatment beam contoured to the exact shape of the tumor. Treatment sessions for me will be 5 times (one week) for an expected duration of one hour each.

The side effects should; ; ; ; Should; ah hum! should be less that what I experienced with the Radiation(s) to my throat. I trust him and that seems logical to me.

So, no knife, no pain, no hospital; heck lets do this.

I want to digress for one second, prior to the rub. (Hay, this is me, there is always a rub.)

One digression topic: there really is no way to know for sure if this is a new primary for lung cancer or my old cancer coming back, unless or until we do Option A, the surgery. All of the doctors fell that their best guess right now is this is a new primary for lung cancer.

Second digression topic: I have gained one half pound in weight since the time of my biopsy.

And now; the RUB.

This procedure requires that I be restrained in my mid section. Much like my throat, I will have a restraint ‘carriage’ if you will, over my body. Part of that restraint has a weight which presses down just below my lungs to prevent movement of the lungs due to breathing. Remember, the treatment takes an hour. No big deal, I can do this….Oh wait, I have a feeding tube right where the weighted portion is to lay on my stomach. Just pressing on it is painful. A weight pressed on it for an hour?

At the end of the month we will do a dry run, getting set up, measured and fitted for the device. We will see. As always, I have to have the painful version of every damn life extending procedure I have had to date. Why not! What, I thought option B would be a cake walk?

OK, there you have the options. I selected option B, the Radiosurgery. If I can not endure the procedure, I shall be scrubbed and prepped for surgery. Oh well, at least I have an option, that’s more than some can say.

Today, like every day, is a struggle to endeavor to persevere.

(10 bonus if you know what movie that is from)