Ports & Starboards & Stuff 6/30/11

Dear Friends & Family,
 They always call the day before surgery to remind you of the dangers of tomorrows surgery. "Please email all of your medical clearances, and medicine lists, and sign these waivers". "Do not take your medication in the morning, and by all means do not eat after 8pm tonight, not even water". No wonder I need a port, they insist on dehydrating me before any of these procedures. It is a very dry 110 degrees, I feel like I'm evaporating. The installation of the port went well. I am convinced that this additional surgery will make the next portion of my treatment easier to endure. When I went in for the neck resection on June 2, the Anesthesiologist Dr. O'Bern slips me the "mickey"(verced & some other stuff) as we are heading down the hallway to surgery. I let him know that I'm aware of this and follow up with " Celine Dion walks into a bar, The bartender says "Hey Celine Dion" Why the long Face? The anesthesiologist really got a kick out of that after the ER nurse explained the joke.
Traveling in the current circle has brought me some insights that I have heretofore been blissfully unaware. I have accumulated a ton of medical history over my lifetime. (Heart history, family history, current medication, EKG's, CT's, Ultrasounds, MRI's, Current Bloodwork) That medical history, and the living will, and the durable power of attorney, needs to be made available to all of the various specialists that are working on my case. Beth & I have begun to scan our records, so that they can be sent to all the requesting physicians. We also carry a file box with us to the various appointments. That way we can provide info, and take copies of our records from the attending physicians office.
Most of the attending health care professionals have been very gentle, and caring. Beth & I like to bring some form of gift(candy) to the people caring for us. Very few are just punching a clock. The current tour of Medical facilities has included a full range of facilities. We have been to big, old, new, and boutique hospitals. The level of care has been above average, to excellent. My physicians seem to have been drawn to me in a way that I would describe as spiritual. The right professional has been referred, or suggested. We were troubled early on with the avalanche of choices that were to be made. The suggestions to get additional opinions were all around us, and everyone had a friend who had the exact same cancer. I should go to a major cancer center, I should get a 2nd opinion, consider a holistic approach. I should get a lobotomy. The noise in my head began to drown out my sense, and intuition, that all of this is happening for a reason.
I know that everything I have ever needed in my life has been drawn to me, and this cancer is included. I am uniquely qualified to go through this challenge. Life was given to me, and I was able to interact with my environment naturally, and gradually. I did not teach myself how to see, I did not teach myself how to deal w/, gravity, or hearing. I was gifted w/ the ability to exist and blessed with an environment, and intellect which allowed me to apply the immutable laws of nature. I was nourished physically, and spiritually from the very beginning.
Tomorrows(oops Todays) only appointment is with Dr Umar, who installed the feeding tube. That hi-tech apparatus(it's a short quarter inch piece of flex tubing w/ a crimper, and a cap) is working like a dream. I run 60cc's of water through it about 3-4 times daily. It is conveniently located smack dab in the middle of my stomach about 3 inches above my navel. The trickiest aspect of the feeding tube is keeping is securely fastened to my abdomen. I tape it to my chest which is gradually becoming hairless.
I hope that you guys can tolerate these incessant ramblings of mine. I will not be offended if you ask me to remove your name from the distribution list. I have been challenged to add photos, and music links. You know who you are. The guy at the Apple Store has helped me transition to the Mac Book, but I have a long way to go. I hope that these writings help me stay centered during the difficult days ahead. My navigation of this process cannot be done alone. I rely heavily on a God to provide me w/ the strength necessary to stay on course. You and the rest of my support network, are an essential element to my recovery. I have received a ton of prayers, and best wishes, which I can feel as I go into stressful procedures. I appreciate the feedback, and enjoy reconnecting with so many important people in my life.
That's all for now.
Much Love,
TJH

Feeding Tubes and Facemasks 6/28/11

Holy Nellie! This is some serious shifting in the Matrix. I have fallen through the looking glass, the Hookah smoking caterpillar must have decided to set up shop in my cerebral cortex. Yesterday I had an ultrasound of my carotid arteries, followed by my much anticipated meeting w/ Dr. Tannehill Radiation Oncologist. The ultrasound went very well until she did the left side, which is the site of the incision. Talk about involuntary muscle spasms. My nerve endings were on fire. The meeting went very well. My erbatux treatments are scheduled to start the same day as my radiation, July 11. I will have radiation Monday through Friday at 9am, and erbatux for 2 hours every Monday at 11am. If you are available to drive, I have openings Wednesday, Thursday, and Friday. The facility is state of the art, and the machines are brand new. The waiting room is clean and comfortable. The appointments should only take about 30-45 minutes. Operators are standing by.
The first step was to send Beth home to get my dental trays which we didn't think to bring. Once the trays were in I was invited to the ct scan for the masking, and mapping portion of the appointment. "Just lay down right here, on this hard metal table". Bear in mind that the Gastric Doctor recently poked a hole into my AB, and secured a fabulous feeding tube through my AB. I'm pretty sure it is the only AB I have/had. "Try not to move, but breath normally" "This is going to be warm, and wet". The mask started out as a flat piece of fibermesh, which is warmed and becomes pliable. He placed the fibermesh over my face, and stretched it down below my ears, and over the top and bottom of my head. Then he attached it to the table, and waited for it to dry. Once he plucked at the nostril area and asked if that was better. I said "g_n$th#ry" through my mouthpiece and face mask. That thing hardened up pretty quickly. "Now please hold still, so that we can take some measurements". Into the CT I go for a quick trip of about 5 minutes. I felt like Jody Foster in First Contact. The trip through time ended without incident, and he unsnapped the mask from the table. It felt like the snaps on ski boots being released. That facemask had really secured to the table. I made it through the process w/out much trouble. The Doctor came back in and invited me to see the radiation room. It was very impressive, the brand new machine is state of the art, one of only 4 radiators like this in AZ. The same kind of machine that is being put into the new MD Anderson facility scheduled to open in AZ this fall.
 This field trip lasted about an hour and a half, after which I was completely gassed. I'm very optimistic today that this stuff is all going on for a reason, and that I'm heading in the right direction.  Tomorrow I have a port installed at the outpatient center. This sounded like a good idea last week when they had me agree to it, but now I have some reservations. The port allows the medical professionals access to my circulatory system w/out finding a new vein every week. Oh well they're not putting it in today. Who comes up with this stuff.
My attitude and appetite are good. Beth is good. My spiritual condition is good. My fear level is down from a week ago. I'll keep you guys posted. Know that I appreciate the calls, cards, and most importantly the kind thoughts, and prayers. Feel free to share this with my friends, and family.  

The adventure continues...
TJH

Tube is really weird 6/24/11

Hello All,
Wanted to give you guys some good news. Yesterdays CT scan of my lungs came back clean. The feeding tube is quite the accessory. I gave it a test run w/ water last night, and it worked just fine. We had 7 cases of special liquid diet supplement delivered, with a bunch of 60cc syringes. I think they found my hidden ab and cut it open to hold the feeding tube. We are holding up pretty well considering the avalanche of change. I am going to be treated w/ erbatux instead of chemo. My medical oncologist Dr Bachrach met w/ us for over 2 hours earlier this week. He recommended erbatux  an Imclone(Martha Stewart) product that attaches itself to the cancer, and self destructs. The results are very comparable to chemo, if not better. It is not a platinum based chemical, and is much easier on my systems. I guess platinum plays hell w/ the heart, as well as the kidneys, and liver.  The treatment regimen is similar. I will be hooked up for 2 hours once a week during radiation.
The face mask gets fitted on Monday at the radiation oncologist Dr. Scott Tannehill. I was originally scheduled to start erbatux, and radiation on Tuesday July 5th. We may delay treatment until Monday July 11, in order to synchronize our schedule. Beth wants to be with me on the days that I get both treatments, and Mondays will allow this to happen. The Doctor sees no problem with this. I met w/ a surgeon yesterday who will be putting in a port next Wednesday. We really are holding up pretty well. We have no shortage of volunteers.
Please feel free to share this info w/ any friends or family. We really appreciate the love and support being transmitted. Feel free to call or write, I can't promise a quick response, but I will get back to you. My voice is pretty strong right now, but they expect that it will fail at some point into the treatment.
Much Love,
Tim   

6/22 Update

Hello! Here is a Tim update…

Monday was dentist to get the clearance for radiation – he got his treatment trays. Ready to go there.

Yesterday we went to the medical oncologist – over 2 hours of information we would rather not have. Instead of chemo Tim is getting Erbitux – a targeted antibody. Administered like chemo – once a week for the 7 weeks. Lots of fun side effects and very expensive. Better for his CAD. They also want a port installed – it is added to the “to-do” list.

Today is feeding tube installation day. He should be out tomorrow and then they want a CT of his chest at 2:00 and a meeting with the surgeon who puts the port in at 4:15. I guess that will get done one day next week.

We are exhausted and just getting through it all one thing at a time. Very overwhelming. I just didn’t want to forget to send an update along.

I am waiting for a return call from the home health care people and the doctor. I am supposed to have some supplies here for the feeding tube and haven’t seen them yet.

So – we are hanging in there for today. Looking forward to cases of Ensure and yummy protein stuff in any flavor they choose. After all – he won’t be tasting it.

Thanks for the good thoughts and prayers. Feel free to pass this along. I am sure I missed a few emails in there.

See you soon,

Beth

Feeding tube update

Dear Friends,
Cover me I'm going in! Feeding tube frenzy starts today at 11:30. They want to get it in early so that they don't have to do it on an emergency basis. I meet a new surgeon tomorrow to get a port installed for my NOT Chemo therapy. I am going w/ some kind of high tech antibodies that attack the cancer and self destruct. It's a product made famous by Martha Stewart. Imclone is the manufacturer of this antibody called urbalux. It is supposedly easier on my delicate system. The platinum in Chemo plays hell w/ the heart, and other organs. Face mask fitting is still set for Monday. There has been some discussion of bids being made on the actual face mask subsequent to treatment, all I can say is that you are some sick puppies. Despite my fears, I am turning myself over to this process. See Ya on the other side of fear. Feel free to forward to our friends.

Much Love
TJH

Fathers Day

Dear Friends,

Thanks for the emails, and the cards. My journey is getting more interesting every day. This walk is not for the timid, or faint of heart. My spiritual condition is pretty solid considering my physical status.(just for today) I am still susceptible to 100 forms of fear. I spoke w/ my 2 sons today from Stuttgart Germany, where Kevin is visiting TJ. They went to a Green Beret wedding in Prague over the weekend, and were on there way back to TJ's condo after a Foo Fighters, System of the Down, Incubus concert. TJ looks pretty impressive in his new dress blues. We'll post some photos this week on Facebook.

I've been getting a great deal of support. I have been to a good amount of meetings, and have spent some good time w/ Howard. The visits, phone calls, and prayers have been wonderful. I will probably be having meetings in our home during my treatment. You are certainly welcome if your schedule allows. 

My treatment schedule is rapidly approaching. I get fitted for a fluoride mouthpiece tomorrow. This will allow me to protect my teeth during radiation. I meet the medical oncologist on Tuesday.(chemo) The feeding tube to help maintain my nutrition during treatment gets installed Wednesday. Next Monday I am scheduled to be fitted for a fabulous face mask to be worn during radiation. It bolts my face securely to the radiation table, so that I can't move even if I really want to. Then let the games begin. The first week of July I start radiation therapy, 15 minutes 5 days/week for 5 weeks to both sides of my throat. Then 2 additional weeks focusing on the left side only. 

My life has never been boring. I have insisted on getting the very most out of each day. In spite of this adversity, I hope that I can continue to be the best possible patient over the next couple of months. I am willing to turn my life and will over to the care of God, and trust the people he has put in my life. I look forward to the opportunity to practice these principles in all my endeavors. It may look clumsy at times, but the people in my life will provide some bumpers to keep me on the lane.

I look forward to our continued friendship. Thanks for your service.

Love Tim & Beth

TJH

Friday 6/10/11

The staples have been successfully removed, that is a very odd few minutes. When he gets the micro pliers/scissors tool to your throat, you have a split 2nd where you feel very strongly that it might be too early for removal. It did not hurt nearly as bad ad I imagined. There were only 2 or 3 staples that didn't want to cooperate. Dr Lykins is one of the most positive, and optimistic people I have met. His attitude is infectious, and I feed off that kind of energy. The tonsils remain the source of a great deal of pain. He assured me that they should be very sore, because in addition to the tonsilectomy, he took some extra tissue above and beyond the minimum required.

6/7/11

Spoke to a young man last night by the name of Jeff Brucker(62). He will be up in Phoenix for the next few months getting treatment for the same cancer I have. He lives in Tucson, and has a brother in Phoenix, not far from Mayo Clinic. He is facing surgery on Wednesday to remove Lymph nodes and part of his trachea. He will more than likely be on a feeding tube during his radiology. I am writing this in part to make sure that I remain grateful for the seemingly bad things in my life. I also want to commit to be as helpful as possible to this stranger, and I want to try and make sure that our community reaches out a hand to this newcomer. He will be at a meeting tonight at the home of Steve Leitz. I would like to attend, but have not broached the topic w/ Beth just yet. She has veto power, and is not afraid to use it.

Our Dr. called today to let us know that the pathology report confirmed that the cancer originated in my tonsils, and spread to my lymph nodes. We meet w/ him on Friday for the always fun staple removal procedure. My buddy Eddie actually had me turn my head and look away so that he could count the staples. He came up w/ 29; we’ll have to see the actual count. The really seemingly good news is that this cancer has not moved from the tonsils beyond the lymph nodes. Most of this information is flying at us so fast that we fail to fully comprehend the full meaning. I have been inundated w/ new terminology, and scenarios. Beth and I have tried to stay on the same page, but I must admit that she seems to be a few chapters ahead of me.

We had some friends over this afternoon, and enjoyed some delicious split pea soup. We also shared a few quiet moments, some laughs, and some experience, strength and hope. The feeling of friendship is powerful, and yet immeasurable. I am choosing to tap into that power for some additional strength that I may need going forward.

          We made an appointment w/ our new oncologist set for tomorrow afternoon at 3pm in Scottsdale, near Via de Ventura, and the 101. Our understanding is that the protocol for this type of cancer involves treatments 5 days/week, for 6 weeks. The Doctors office is in Scottsdale, and they have a satellite radiology location in Gilbert.

          After the oncologist appointment some friends are bringing me dinner and a meeting. Edie and some of the fellas are going to take the 2 mattresses, and the elliptical, and the treadmill over to Eddies garage for some short term storage, in anticipation of a visit from Kevin and Terry on Thursday. Life continues to unfold into goodness.

6/7/11

Time flies when you don’t write. Spent 2 days prior to surgery getting an estate plan started. We were at the lawyers for 5 hours spread over 2 days. What a perfect distraction from the thoughts of surgery. We came out of the office w/ a new trust, wills, durable powers, living wills, and donor instructions. We still have a great deal of work to do, but the specter is not hanging over my head, and I am not afraid to take the action.

Surgery required an 11:45 report time for a 1:45 surgery at PV Hospital. Beth & I were about 35 minutes early, and were met in the entrance by my Aunt Mary Maloney. She flew out from Cleveland a day early, so that she could see me prior to surgery. She is truly a legend, and I love her. She is my Godmother, and gave direct reports back to family in Cleveland.

Beth was surrounded in the waiting room while I received the care of the 2 surgeons, and their staff for the next 4 hours. The surgical procedure seemed to go as drawn up. They didn’t have to transect my jugular, or the nerve that allows me to raise my left arm above shoulder level. Didn’t get into a hospital room until almost 10pm, thanks Obama care.

I felt pretty good first day out of surgery. I was hooked up to plenty of IV’s, and was getting stabilized. I knew I was getting plenty of liquids, but I became painfully aware that my bladder was incredibly full. I also vaguely remembered the catheter being removed sometime after surgery. Just a very vague recollection to be filed away. Until now! I had to Pee, and I had to Pee now! Holy S*** I can’t Pee! WTF!! I was well on my way to a full scale meltdown, w/ no spiritual solution. Somebody come in here w/ a can opener, and relieve this vessel before it’s too late! Then…just a few drops, and Holy S*** it hurts to Pee, I don’t want to Pee, I don’t have to Pee, I was just kidding. My life hung in the balance …To Pee, or not to Pee? That was the question. The rest of the Hospital time passed fairly uneventfully. Eating was very difficult, but they had some great chicken broth. We tried to walk 3 or 4 times a day around the recovery area. The staff was kind and quick to help. I did not rest well in the Hospital, but I recovered enough to be released on Monday afternoon.

Tuesday 5/31/11

Went into get the tires rotated and ended up w/ 2 new Michelins good for 65,000 miles on a car w/ 195,000 miles. I am just an up sell waiting to happen. Slept like a baby last night, thank God. I feel pretty good today. Looking forward to meeting my Estate Lawyer this afternoon. Have not been overly prepared in this aspect of my life, no time like the present.

Not sure why I woke up in tears. I had a perfectly wonderful day w/ family and friends. Beth was perfect today. I was able to enjoy the gifts I have been given, and share some w/ others. I said my prayers before bed, and woke up weeping at 12:30. Not sure, Doubt, Fear, mostly self centered. Thinking about me, My family My disease My life, My powerlessness. Put on a nice appearance for those w/ a view, yet when the lights go out, where is my resolve, my determination, my serenity? Can I match my outsides to my insides? Or is that the problem, do my insides match my outsides?

 Going to see the estate lawyer on Tuesday w/ Beth. Not my finest hour. With the help of mom & others I have been getting the pieces of my puzzle into his hands over the last few weeks. Not as overwhelming a task w/ the right motivation. (Fear) He has a good deal of the info, but I need to provide some back story and context.  I hope he can bring some clarity to this aspect of my unmanageability. Started getting rid of some of the clutter. Clothing and material static needs to go. Had some chest pains Friday night, couldn’t bring myself to call 911. Didn’t have time for a trip to the ER. So much to do.

Mom & Beth & I & TJ & Kev are living blessed lives.

I appreciate & am humbled by the outpouring of support being offered. Every person has a story to share that can help me, if I am willing to listen. Not particularly open minded when the story involves a course of action which is different from the one I have chosen. I need to be more open minded, tolerant, compassionate, and kind. I just want to slap the hell out of some of the kind people offering support. How screwed up is that?

The birds are chirping, guess it’s time to put a stop to my late night ramblings. Thanks for being there.

TJH