Summer Camp with an Emphasis on Seriousness

PT 9:00

PT/OT 10:30 (Swimming)

OT 1:15

OT 3:15


An 8 x 11 inch sheeet of paper stuck to the wall above my head each morning announces in laser print my activities for the day. Kind of like being at summer camp but with an emphasis on seriousness.

It starts with leg training under the watchful eye of Les - a gym pro who can tell you the name of every muscle in the body and how to exercise it and if you give him the chance he will. Sonda, a gentle, sweet, passionate girl who has been in rehabilitation work -either worked as a receiver or giver all her life. While in the 10 x15 foot pool both staff have to stay close to me. Like being fouled in a basketball game I'm guarded really tightly. I have a better chance of drowning from the staff than the pool. After lunch I get fitted for my wheelchair that I will be bringing home (I still can't walk safely) . Eric, another rehab specialist, took down the details for the order. Eric, like all the staff, has a keen eye for mechanical correctness in posture and is always on to me about my posture alignment. Later Suzan provides me with a lesson on wheel chairs 101, honestly there is a lot to know about wheel chairs. Suzan, a confident member of the team, really pushes you to your limits. The day ends with a trip to the gym where Lyn launches me into standing exercises. With the point being duration of standing, I don't understand why they have me waving this stick around like some sort of ninja warrior. Finally Sonda and my Chris join us for a standing card game of scrabble slam which like all games with the word scrabble, Chris wins.

In the three weeks I've come real far. I give full credit for the progress I've made to the professional staff of the Physical Therapy and Occupational Therapy Team at Oro Valley Rehabilitation (including all named above plus Kathy and Wendi). Thank you.

Two Bullets Dodged

Hello, its been over six weeks since I last blogged, so you must be eager for an update. To do so, I have to ask Chris, since I don't remember. The discharge plan from N.W. Hospital was decided to be home. No sooner had that been decided, than a change in plan was made based on the first of two life threatening events I experienced.

Blood Clots were forming in my legs and were creating a saddle pulmonary embolism that had formed in my chest and was expanding to block the airway to my lungs. The doctor encouraged Chris to call in family. According to doctors, usually people die from this kind of complication. In a foggy conciousness, I remember people standing around my bed and one doctor saying "Keith's being held up by "wings of angels".



Soon after recovering from the "embolism" I spiked a fever that in short order had my temperature up to 103 degrees. Three days of ice bags and the work of a great lab in finding the correct medication brought the infections under control.



I've now been at Oro Valley Rehabilitation Center for two weeks. I went swimming for the first time yesterday marking the high point of my progress. In spite of soiling my pants twice that day and having serious dizziness that cancelled my morning RT/OT sessions - SWIMMING MADE IT A GOOD DAY. Self propriety and vanity in a hospital setting all but disappear so I apologize for my reference to toileting however bathroom issues are such a big part of my day I just had to mention it and in particular the techs and nursing professionals who are a part of that nasty job of patient/bed clean up. Thank you for the amazing empathy and genuine care you provide.



I feel that not talking about those two critical hospital events other than in a newsy way misses the point of this blog being about me. Having two near death experiences immediately took me to a spiritual place where God has much more for me in life. Death, you learn, is not scary when you face it surrounded by the people you love. Each day forward is viewed as a gift where nothing is taken for granted. If you step back and look at the big picture, what you see is that a community surrounds you. That community gives me confidence that no matter what happens, our family will be ok.

What went on????????

What went on...?????? Other than one and 1/2 weeks I think I missed.....? The only way I can tell the story is backwards - an old trick of investigators. Stories told correctly backwards are never wrong. It starts off with a trip to the chemo clinic for one of three weeks of Thursday IVs of Gemcitabine - that was today. Sophia started the day by leaving for a trip to Maryland with Susan. I was looking at her new suitcase standing surrounded by her stuffed animals in the living room and and noticed the luggage was moving. We had just learned that I had been reacting to a new drug , Baclofen, which the oncologist had prescribed for my chronic hiccups. It occurred to me that last week I was "disoriented, lethargic, and delusional," exactly the side effects the drug description warned against. (The doctor is weaning me off the drug and today I can write - sort of - although Chris is doing the typing as I dictate.) The day before, we went to Sophia's softball game. I remember getting a Whopper at a fast food joint and a day full of hiccups, but not much of the game. I also tried to give this poor nurse at United Health Care my blog page address over the telephone, and knew there was something the matter with me, messing it up big time. The early part of the week I can't tell you other than Sophia's softball game and a lot of bloody noses (mine, not hers). I had to take salt tablets.....? Dizzy. Wrapping it up, what went on is the same thing as I said in the first sentence: What went on....??????? Other than one and 1/2 weeks I think I missed.

A burrito with Paxil on the side

Paxil - an anti-depressant that I've been taking since this whole thing started. Pancreatic Cancer is known to be linked to depression so it's a good thing to be using a drug like Paxil. Realizing the forest is more than the trees, the big picture says I'm depressed. I just asked the doctor for an increase in dosage. In a cerebral way I've understood depression with the dopamine/seratonin dynamic at play where ups and downs are a matter of life's day to day events, what's different (like my current hair cut -brush cut) someone has snipped off all the loose ends where fun and joy seems to reside. I'm not dragging my ass around moping but life's not fun right now and it's hard to engage in events with any excitement and eagerness - let alone talk about it. Emotions seem not only to be the outcomes from what you do but it's what the events are carried in - like a wrapper, like a good burrito, and my burrito has holes in it! And I want to fix it. And it is not just me overstuffing the burrito again.



Talking about it helps, and I need to domore of that but for me the biggest fear is recognizing there is a crack in my armor. Some small unsuspecting weakness that when push comes to shove, the whole thing will cave in. I think I've cried three times since I learned I have cancer. The most recent was with Chris over this whole herculean complex that in spite of my best intentions to stay strong and believe my health, family, finances, house repairs, insurance, and all the other stresses heavy on us are things that are going to work themselves out. I also recognized how different my life is; without an income (temporary- long term kicks in this May); without a job -it's who I've been all my life - you know a supervisor responsible for stuff; and without a way to get well quickly -that's the most damn frustrating thing. Being powerless. These things are are taking forever to resolve.



Three Gemzar chemo treatments down (I called it Gemcitabine before ), 15 more to go!!. It will be October before I'm done. I know the research and development into Cancer has given me life where no promise existed before but let me whine just a little more. My white blood count is so low today I went into the clinic for a "Neulasta" shot that will get my bone marrow producing these important little white cells - side effect bone pain. My platelet count is way down too, so having to watch for bleeding and keeping nose bleeds to a minimum each day is critical. My energy is so low getting the garbage to curb yesterday morning was all I could do.

So you see I'm depressed and what I do have that's good, don't want to fall out of my burrito.

Watching Paint Dry.

Routine has returned to the Smith household and there is some solace in knowing from one day to the next what will happen. Last Thursday I went to the NW UMC clinic for my first round of chemo treatment, given intravenously. I have a port-a-cath surgically inserted near my collar bone, making it much easier for the nurses to get all their lines into me relatively simply - the poke still hurts. The medication has become far less complicated although I've added Lovenox injections - blood thinner twice a day and Tarceva -an oral chemo drug. And then the big daddy, Gemcitabine, once a week while at the clinic. The nausea pills are still there, although I've grown fond of some that seem to work better. Chris gives me the shot and is doing a great job. It's finding fat in my tummy that is the hard part - the site for the shot. (There has to be something said for such a problem but I can't think of it just right now.)



The main side effect for this round has been fatigue, always sleepy and easily out of energy. Today, I painted the front door, and watched it dry most of the day from the couch - my kind of day.

Bye, Bye Blackberry

Blackberry went off line for me from work over two months ago and do I show any wear from it? No longer are dates as important, especially if I forget to write them in my converted 2006 day planner. So sorry if I've missed your birthday; my day planner just doesn't have that feature. Scheduled meetings for the most part are doctor visits or any other professionals who happen to be kind enough to have handed me a scheduled appointment card. I no longer have a cell phone, so that trip down I-10 is safer from accidents but nobody knows where the hell I am! My 2000+ contacts have all but become a handful of memorized phone numbers. My world has shrunk to post-it notes with numbers and names that I can't read without my glasses. Internet maps and tips on where the nearest Coldstone Creamery have disappeared from my life like it was really never there -right. My network has all but been replaced by a land line message machine that never displays the right time, gives wrong dates and won't let me listen to recent messages without cuing through what the machine reports to be something like seven but really is seventeen messages I must listen to first. Oh, I will get to your message... that's if I can find that message pad, pen and my glasses. All of this nonsensical silly talk I guess is making a point for me- staying connected just doesn't happen; you need a network, and I think I have part of the answer found in this Blog (so please, since the rest of my communication world is in shambles pass along this link where you can) but a Blackberry would be nice -don't you think?

Surreal

Aly and Rachel came to visit us in February and both did a good job in getting me ready for the first round of radiation and chemo that was to follow. I have visited with a lot of people in the last little while and what is extraordinary about this experience is how very different it is from the normal. It is much like stepping through the mirror in a Disney movie and experiencing surreal events that make people into super heroes, where time and people's schedules seem to fit better for talking and living, laughing and loving, where silly dances are ok and even breaking out into song is permitted - like in the movie Mamma Mia. Within the span of several months I have visited with all my family members excluding my brother and each have been visits that have been candid, rich and meaningful (Peter: I'm saving the housepainting project for you).

In the last several months Sophia has met and started along the path of a lifetime relationship with her sisters that flowered before our eyes as if in the Wizard of Oz movie she had found the yellow brick road. It's like I lived James Stewart's role in "It's a Wonderful Life" where people - through cards, words, acts of kindness - have reached out to me and expressed their appreciation for me I never expected or even deserved.



The confidence I have in beating this disease comes from many sources, one such obvious place is how this story is unfolding, so many pieces of a puzzle having come together it can't help but be the making of a great movie - with a happy ending. My heart rejoices every day from the healing and growth I see around me. Don't get me wrong: Cancer is not fun, but people, the last four months have been one of the most precious times in my life. And I have you to thank for that.

The Brits are Coming!

Valerie and I are cousins. Valerie's father and my mother are twins who, with their families, have lived across "the great pond" from each other for most of our lives. Valerie and her husband Neal came to our wedding and I was proud to have Neal as a groomsman standing next to me. Although distant in miles, Valerie has done a remarkable job of keeping us all informed and has really been the linchpin to keeping our families connected, so I was not surprised that after learning of my illness, she hatched a plan of getting over to see her cousin and do what she could to help out.

Monday they arrived, and by Wednesday, the back, front, and side yards were cleaned up, the pool was clean, and the extra treatment to the windows gave the Smith household its spring cleaning enviable of any professional service. Neal and Valerie went grocery shopping and besides keeping me full with liquids ( Neil even tried carrot juice) with meals like salmon, steak, lemon chicken my weight rocketed 10 pounds. Thank you so much. Sasha, Valerie and Neal's daughter (21) flew into town over the weekend (she is a professional singer) and we visited and went out to BJ's for even more fun and food. They all left today so the house is really quiet and the meal choices have returned to things like frozen lasagna.

Perspective: My polar bear story one session back had Chris and I in the hospital Friday night. Valerie and Neal arrived the following Monday night and at the time it seemed the farthest thing to what I needed or I was able to do in having visitors. How wrong was I. Their love, effort to help, companionship of kindred spirit, devotion and love to Chris, Sophia and all our family - in all gave us such a warm gift. They are now up touring the Grand Canyon and Las Vegas, the Bay Area, then down the Pacific Highway to LA before flying home. God keep them safe; they are good people.

Polar Bears

My absence from my blog I hope was noticeable and a little worrisome to most of you. What was becoming routine was harder to do each day and even with the expert care of my daughter Brittany I was sliding backwards. Two days from my last treatment of radiation and chemo I collapsed somewhere between the bed and bathroom. Not a big deal in my mind since I've taken hard checks in hockey - as recently as last October I'd like to add - but what lingered was a worrisome ache I soon learned was a kidney stone. Chris drove me to ER - 39 hours later I was in a hospital bed. Oh yeah, I now have blood clots in my chest... seemed that check I got must have been "high sticking to the chest." Did anyone get his number? Eight days later I was out of the hospital. And really other than no longer any kidney stone pain, I had no energy, I was sleep deprived, no appetite, 10 pounds lighter, I basically was a used dish rag wanting to crawl under a rock. Chris and I (oddly on another Friday night) contemplated going back to the hospital which we finally did for six hours - this time the doctors convincing me I was not going to fade away, as my energy seemed just enough to keep me breathing. Well I did find that rock and with a lot of support I slept for 20 hours a day and eventually found my way back to life.


Like a great Canadian Polar Bear waking from hibernation, I've pushed winter behind me and am now feeling better, poising myself for next great adventure.


I don't want to go too far along in my story without stopping to speak of Polar Bears again. Some of you know I am very fond of them and there have been a few anecdotes of polar bear swims on my part to mimic these cold water creatures. My daughter Brittany took on a fund raising challenge up in Canada to raise money for the increasing expenses we are enduring with my illness and her flight to come to Tucson and visit. It was with great humility and thankfulness on my part that Brittany raised enough money to not only fund her trip but she handed us an $800 cheque. Many from Canada stepped forward to help and I honestly have wept in gratitude over this, feeling that the Grace of God is a part of my story where I didn't expect it. Thank you.


The next adventure, round two of chemotherapy, starts next week, three weeks on followed by one week off for 12 weeks. Each week is only once a week, so I hesitate to say, but it sounds like a piece of cake.


Just to give you a wellness update, when I was in the hospital I had lots of tests, and there is no sign of any tumor, although the CA 19-9 tumor marker is still very high in my blood. So it's still there; it's just not forming any tumors.

Pills and Barf

Prilosec - one every morning; Reglan -one at every meal and at bed; Pancreatic enzymes -three at every meal; Xeloda - four in morning, three at dinner (that's the "chemo"); Methadone 3 x's per day; Vicodin - as needed; Paxil one per day; Ativan one/two per day; Zofran every six hours; Promethazine/Granisetron one every six hours (under review); Compazine -one every six hours; Dexamethasone - one every six hours around the clock. About 45 pills per day.


Monday night nausea steady until I take my evening reglan - up comes lunch and at least 500 ml of GATORADE. Not going to be any dinner tonight. Never do feel good, find a way to sleep through it. Tuesday morning "shreddies" cereal manages to stay down, swallow down the prilosc, reglan, pancreatic enzymes, and four xeloda with the granisetron radiation stabilizer. Drive myself to radiation, ask for a barf bag, but manage my way through radiation , back home. About 10 am take the group of pills I take every six hours (nausea and pain) and hold my breath. Nausea remains but sleep overtakes giving me some relief. I wake up feeling sick again, but this time I need to get to the bathroom. Who needs the details, right. Manage through the night -no sleep and feel the same Wednesday morning. I ask to see the doctor after radiation. Two more pills are added to my list and I head to Walgreens to fill them. Both these seem to help, at least I'm not throwing up any more. I'm not having a good week. At one point I told Chris I thought I was pregnant. One other tidbit, nothing like getting close to the toilet to know it needs cleaning. Our toilets have never looked as pristine.

Oh, yeah, now I can't sleep. One more script added -46 pills and counting.

Angels

"Holding on to Angels' Wings" has been my whisper of hope as I stepped into this unknown and scary world of beating cancer. As a young person my faith was strong and my voice rang with assurance that God would protect me from life's misery yet in spite or despite this naive view life's tough lessons along the way have taught me God does a lot more shepherding than protecting. Understanding God's mercy is very perplexing. But rather than get stuck on this point I accept in faith God knows best. I am thankful for all your prayers of intercession on my behalf. The day to day care I've experienced has been evidence of God's shepherding, and there are no finer shepherds than nurses.


I've always had great appreciation for nurses, their training and professionalism. My time in the hospital both with pancreatitis and having the whipple surgery gave me first hand an appreciation for nursing being a vocation. With their humanness and empathy towards the human spirit, their readiness to do anything to help, I felt as if angels were holding me close. Not always was I cooperative, in fact at times I shamefully must say I was combatant, yet each nurse did their job with the utmost respect for me. From Jennifer, Raphael, Heather ...... You know one tool that struck me was their human touch. From holding my hand, a lingering rub of my shoulder, to physically lifting, nurses connect with you in a physical way. It's a contact sport. Not in a perverse way, sadly this notion has all but banned touching in the human service and teaching fields but to have permission to connect as humans through touch is remarkable. Let's just say I've turned into a hugging kind of guy -holding on to angels every chance I get.

Nausea..... no fun.

One of the relaxation images I have been using is a rolling wave rising up to meet a sandy beach with spray and sounds that cascade down a jagged shoreline. Now such images only make me want to vomit.


Big time nausea has entered my recovery experience with a capital "N." The wave image is now problematic. Now it's a perfect metaphor for my mounting nausea as the week progresses, Monday's radiation swells into a sea that by Friday has me crashing to a porcelain toilet.


Thankfully my doctor this week prescribed a new pill for me called, granisetron that I should take 30 minutes before my radiation. Like getting my sea legs, today's post treatment feeling was manageable, although I'm not ready to visit an ocean seashore anytime soon.

You have Cancer.......

I remember being told by a doctor that "we won't give you bad news over the phone but ask you to come in". I got that call Friday afternoon, five days after the arthroscopic pancreatic ultrasound and a biopsy. The news was expected and the event really was anti-climactic having been pretty much prepped by every bed side visit my doctors made since I first got to the hospital. Three weeks of pancreatitis, elevated CA 19 readings and a stubborn unwillingness from my pancreas to settle down werethe first clues. I would have preferred to be on an episode of "House" that within the hour would have discovered that obviously cancer was wreaking havoc; however, medicine I discovered, is built on what you know - endless diagnostic tests eventually proved this. I got a copy of the hospital bill paid again by United,,,, $154,000 for my stay at North West Hospital. I would be the first to say that I got my money's worth but in stark contrast to the monetary business mission hospitals follow what struck me was how the staff, doctors, nurses were totally under a different calling.




The "hospitalist," Dr. Schoenhals, was the floor doctor who quietly sat next to me day after day talking to me like a family member concerned and befuddled about my illness. Within the first week he consulted a gastroenterologist and brought in a surgeon Dr. Nakazato to look at the test results and talk to me about what he might do. Eventually I would met his anesthesiologist and for several weeks each doctor would almost daily give me updates on tests and answer any questions I might have. I bonded with them and joined their team.


So when I got that Friday call I already new the game plan, confident surgery would work and clear on the next steps. I think back to these doctor visits, those quiet moments where trust and faith were born. Was it accidental or deliberate? The North West team of Doctors that are a part of my team are amazing... I have Cancer...... so what?

Chapter 1 "Halloween turns real scary"

The beginning of this whole thing - that's without consulting my pancreas, was the day I found out just how warm and comforting morphine can be to an abdominal spearing pain. What would become one of four trips to the ER over 60 days began on Friday - Halloween night. From my perspective it was 12 hours in length, most of which was feeling the benefits of a retreating morphine high slowly returning me to what I thought was a boxing match I was losing to relentless stomach shots. The comedy of this whole thing came only in the presence of dressed up werewolves, superman heroes and the like, most in some level of inebriation seeking as I was the care of doctors, and relief from pain. Since I slept through most of it, Chris can give a better account of just how bizarre that day/night was.

I pretty much discharged myself on Sunday, convincing myself and all others that the worst was over and little if nothing more needed to be done than to be careful about my diet. Was I ever wrong. On Monday I was back at ER, another marathon that included again that spearing pain and the need for morphine. Chris, who for the second time, left work, endured the hard chairs next to me in a hallway bed, hospital chaos all around us, sat with me, held my hand, and gave me courage and never faltered from asking a nurse or whoever to take care of any need that I had.

This admission lasted longer than a weekend with many highs and lows for the next 21 days. For me, as I look back at it, what impacted me most was my relationship and respect for Chris and how I totally needed to draw on her energy. She was there for me every step of the way. The times when I was short, frustrated or just plain cantankerous she just dealt with it. I came to discover a new side of her where her shoulders were wide and her heart was strong. I will talk of angels in my story; I want you to know I married one. Thank you God.

First Update

Congratulations for finding my Blog. I was encouraged by a very close friend Kara to create a blog to give everyone updates, provide some amusing anecdotes about my adventure and to keep the creative juices flowing in me - I need a video camera not fonts and words but I will give it my best.

I feel like a script writer in "LOST" needing to go back in time to create the context for the events of today. So forgive me if I digress (not today) but I would say I'm on Chapter III, "Chemo and Radiation Begins".

For the next five weeks, every day I'm at UMC promptly at 8:50 am for Tomotherapy radiation treatment. But before that, 30 minutes after eating breakfast I take four "Cap a side of bean - my translation" or commonly called the chemo pills, which because I am so pragmatic I have to say costs about $20 a pill. I will be taking 210 pills by the end of week five, Thank you. United Health Care prescription plan -for me only a co-pay of $20 dollars. But let me say this radiation machine is very precise, referencing the exact location by three tattoo's I proudly now have on the sides and front of my stomach. Each treatment requires some fine adjustment, and in I go into this cylinder, hearing this small locomotive sound move around my torso, six minutes where I get the feeling that my tummy is cooking. I've played three golf courses in my mind -places that give great peace. today was Roseland, yesterday Ridgetown and on Monday Indian Hills. I'm feeling OK after the treatment, driving myself back to the house and laying low. Forget about swimming right now which I originally thought could be a part of my daily routine. Maybe next week. But today, I've started my blog.

I do hope you enjoy and find some connection as I retell me "Mixing it up with PC".