November 21, 2016
I started seeing symptoms in late spring. It was around the time we moved our offices under duress. I thought stress might be a factor, but when the symptoms did not resolve with time and my own treatment by the end of summer, I got a colonoscopy. It revealed stage III rectal cancer. Additional testing also exposed an early stage l lung cancer unrelated to the rectal cancer.
The last seven weeks have been a roller coaster ride. They have involved multiple appointments at Northwestern Hospital and Mayo Clinic which have finally culminated in a course of action that I can live with. (Pun intended) I will undergo lung surgery at Mayo Clinic on November 15, followed three weeks later by pelvic radiation at Northwestern Hospital. Pelvic surgery will be performed six weeks after that also at Northwestern. As a result, I doubt I will return to the office before March.
These are the challenges that have been dominating the actions of my and my family's lives these past few months, and yet, the most remarkable aspect of this ordeal has had nothing to do with the disease. The prevailing emotion I feel is not fear or even worry, but rather an overwhelming sense of gratitude accompanied by a beautiful , and quite often, tearful opening of my heart. It has been brought on by you, the family which I did not fully realize I was a part of. Your kind, caring words and your outpouring of love and support nourishes and energizes me as I move into this next phase of treatment. I enter into it not alone, but embraced by the collective energy of all of you. I am in awe and wonder at the place you have brought me to. Thank you!
I would ask one thing. Do not think of me with concern, but rather when you laugh. Let us share only in the healing joyfulness of the heart.
With vibrantly alive peace in my heart,
Update 1 (11/23/16)
Irony and patience.
Hello my friends, I'm home. They released me yesterday and we made the ride home last night. I'm in the process of adapting my hospital routine to home with Barb's help, and Xiaoyue stands ready to do whatever she is asked. Meagan was a wonderful support while we were in Rochester and did the driving in both directions. We couldn't have done it without her.
I have a persistent leak along the staple line where they removed part of my lung. Hence, I still have a chest tube in until the leak stops. There's no saying when that might happen. Might be two days, might be 10. I'm on oxycodone about every three hours which does a good job controlling the pain but it puts me in a weird headspace. I sleep quite a bit. Most of the rest of the time I spend staring at the ceiling contemplating.
The irony is that the leak may be due to the exceptional health of my lungs. My normal breath volume is above normal. That makes my lungs more flexible than most. When they do surgery they deflate the lung, and staple it back up in a flaccid state. Because they have no real way of evaluating how the lung will respond, and because I expand greater than most, the staples are pulling more, causing the leak. They tell me all I can do is wait.
This puts me in the unusual position of doing very little and waiting. I'm coming to a new appreciation of presence. If there is little I can do except wait, then that is what I will do. Time has a tendency to move slowly, but it is not dragging. It's an interesting sensation. The only time I feel anxious about the passage of time is when I am in pain. At those times my perception of most everything begins to fade around the edges, and my focus goes inward as the pain looms large. That is when I feel the slow march of time most acutely. This experience has given me a whole new appreciation for the patience of Job.
I'm scheduled for a planning session for radiation next week. It may be difficult with the chest tube, but I'm anxious to get it done. The sooner that is done, the sooner radiation can start. I do, however, have several questions for the physician who will be directing it, which may change the timeline slightly.
I took an Oxy a few minutes ago and I'm beginning to get sleepy. I want to thank you for your steadfastness, your support, and your love.
Update 2 (12/5/16)
The air between my ears...
I'm quite a bit more comfortable today. The time since surgery, the narcotics, the supplements, and the medical marijuana are finding a much more agreeable balance. Nearly all of the pain I feel is in my left chest. Some of it deep, some of it more superficial, and often no way of telling which is which.
But sometimes it's easy to tell. When I'm achy over the left chest and upper arm into the side of my neck .When it is exacerbated by the touch of my hand or the pressure of the pillow. When there is a "snap crackle" to the touch and a sense of mercury moving under my skin, then I know what it is from.
It all stems back to the leak in my lung. As air escapes the lung and moves into the chest cavity surrounding the lung, it seeps out of the chest cavity and moves between the tissues finding the path of least resistance. In the hospital they told me it was subcutaneous air (air under the skin). It filled up my superficial chest and the side of my neck to the point where it seemed I had no neck at all. It was fascinating seeing x-rays that included the subcutaneous air. There were little gaps; riffs between muscles and skin, pried apart by the air. When you touched the area you would feel and hear a slight popping, not unlike breaking packing bubbles, but more subtle. When l hugged someone and our cheeks met, they could hear the popping.
That subcutaneous air is finding its way through my bloodstream and out of my system. I once again have a neck, and my voice is returning to normal. The inflammation in the skin and muscles seems to be retreating and my pain subsiding, but my ears are still plugged. (Not that they were all that good before.) This seems to be a barrier to full social intercourse, and it has a way of reminding me to keep my focus inward. This is, after all, only round one.
Update 3 (12/6/16)
I am not fond of roller coasters. That started when I was 10 years old. The Kiwanis carnival would come to Livingston, New Jersey, where I grew up, for a week every summer. It was a big deal, and if we were good, we might go a few times in that week. It was a dusty affair with the smell of cotton candy, the ringing of bells, stuffed animals and cheap, easily movable rides. The culprit at that time was not actually a roller coaster, but the tilt -a -whirl. That is when G force motion first made me sick. Over the years I have tolerated it when I had to, or when we took the kids to Great America. I knew that I would be nauseous for the day and that it would take a good night’s sleep to shake off the effects. It was just a matter of sleep and patience.
I'm still not fond of roller coasters and the jerky and unpredictable, off-balance feelings they elicit. The pressure on my brain and organs and the accompanying nausea is, for me, a most unpleasurable experience. If you ever want a confession or State secrets from me, just make me nauseous.
This most recent roller coaster ride started with the initial diagnosis of rectal cancer back in September. Just as the realization was beginning to settle in, a second diagnosis of lung cancer was made. I felt like I couldn't get a break. I didn't know whether to sit or stand, laugh or cry.
The next two months were filled with a multitude of diagnostic and doctor appointments, ranging 20 disciplines, at three hospitals. You would think that the opinions from these top flight institutions would align, but that's not the case. The more I drilled down and asked questions, the more I realized there was a lot of variation within the medical model. What is even more interesting is the generally unspoken, although polite, animosity between "colleagues" from different institutions who hold different viewpoints and opinions. One doctor considered what he does the "Lexus" of surgeries while that of a colleague at a different institution is viewed as a "Pinto." That analogy was actually presented to me. There were times when I wasn't sure if I was in a hospital, or in a car dealership.
These differences in opinions and approaches, I was told, are based on "the science." The thing is, they are all reading the same studies, sometimes performed 30 years ago, and coming to different conclusions. And everyone feels they are right. This includes my own holistic biases. The trick for me was finding some sort of balance between my own convictions and the medical "standard of care."
I found myself on one of the most topsy-turvy roller coaster rides of my life. I came to recognize that every time I met with a new group of doctors, that I would go into a depression, and need a couple of days to process all that was presented to me. The ups and downs were remarkably off-balancing. Those who were sharing in my process at the time provided ballast and a perspective that were both welcome and stabilizing. To those, I once again share my gratitude. It was quite a ride. (And I anticipate will continue to be.)
It has been two weeks since the lung surgery. About half of that time has been spent at home with a chest tube. The pain has been up and down. Sometimes managed well, sometimes not so much .A few good hours could morph into rocking, breath-holding, discomfort for the next few. Medication and sleep were/are my refuge during those times.
The chest tube has stopped draining fluid and air in the last 12 hours, and through the loving kindness of those who support me, I have an appointment on Thursday with a thoracic surgeon at Rush Memorial who (I hope) will remove the chest tube. Dr. Seder has never seen me before, but is willing to do it out of the kindness of his heart, and out of respect for fellow colleagues and for the surgeons at Mayo where he did previous training. (I refuse to return to the "Lexus" doctor at Northwestern.) Dr. Seder and Theresa have saved me from another 12 hour round trip back to Mayo which I was willing to make, but am glad I don't have to.
The ups and downs of this roller coaster ride have been an integral part of the journey. I'm coming to anticipate the instability and brace for it. Although my hopes are up about Thursday, I'm armoring myself against the possibility that the tube may not be removed. Like I said, "I'm not fond of roller coasters," but for the time being it's the only ride in town.
Update 4 (12/6/16)
There are no strings on me.
That song from the Disney movie Pinocchio keeps running through my head. It has been there for days dying to get out but I haven't had the energy to exorcise it. The chest tube was removed on Thursday. I was so looking forward to getting it out. The pain was becoming greater by the day which restricted all movement. Even lying down and breathing were becoming a chore.
Dr. Seder is a pleasant man with a kind loving eyes and an open heart. He trained directly under Dr. Wiegle at Mayo (who did my surgery). That continuity of training and spirit were a comfort to me, even though I knew it was coming.
He sat on my left side (where the tube protruded). He said, "I understand you're a chiropractor, take a big breath in and let it out slowly." At this point I'm thinking that he is using techniques, like I do with my patients, to get me to relax. I'm also thinking, speed not power, speed not power, a dictum in chiropractic. He says, "take another breath and humm" and as I do this I feel a tearing, white hot pain shoot through my body, no thought, just reaction. My wife said she had never heard me scream so loudly. She said "you clutched your chest and abdomen, your eyes filled with tears, and you began pacing like a caged animal." My guess is that I let out a few choice words as well!
I was so glad to get those 3 feet of plastic tubing out of me. It was freeing, and yet, I was in more pain then than before. It took a couple of days to get past that. I have been sleeping a lot and waiting for my next dose of pain medication, but I can feel significant improvement day by day.
I'm stronger now than I have been since the surgery. I'm beginning to be able to move my upper body more comfortably. Where I had a spear running through my left chest from front to back, that pain rather quickly morphed into a dagger only in the front, and now only moderate gripping periodically. Strength is returning to my arms and shoulder girdle. The pain medication schedule has lengthened to six hours from four .I can lift and scoot my trunk with my arms while sitting, and I am coughing without dread. I am tempted to experiment with other ways of lying down (other than flat on my back). I need to develop that skill by Wednesday when they do the simulation for the radiation.
I will have to be strong enough to lay facedown in a CT tube for 45 minutes. It seems I'm on track to get there. I have at least a week after that to continue my recovery before the radiation starts.
The conundrum: what if the CT, which is done at the simulation, shows significant shrinking of my rectal tumor? I have been sticking to my program with great discipline and am (maybe falsely and overly optimistically) seeing change. If that is the case, I face more decisions. Sometimes, I think, it's easier just to continue with the plan laid out; most of the time I want to do what's right for my body and spirit. It's that territory in between that is so difficult to navigate.
Well, one thing at a time.
Update 5 (12/15/16)
Skin and bones
If you see me out and about, don't be shocked.
I'm skinny. Really skinny! My butt sags under layers of skin. So does the skin under my arms and under my chin. I'm seeing my father's body, frail in his later years,emerge through my tissue. It is a bit amusing and yet disconcerting on many levels. He died of lung cancer.
I can count my ribs and know that the chest tube was inserted between the ninth and 10th. I can feel the still swollen surgical scars and the lingering warmth of the healing process. I haven't taken oxycodone in over 48 hours and only one dose of NSAID's.
My appetite is returning with a vengeance but I'm not sure what to eat. I have been nearly fasting for the last couple of months with the goal of starving the cancer. I have been surviving on fresh vegetable juice, protein shakes, nuts, apples, carrots, and steamed vegetables. I have lost 30+ pounds. That's where most of the weight loss has come from. It feels good to be as light as I am, but my body is telling me that I now require more calories and energy to heal.
My body is telling me that it's time to eat. The way I have been eating has brought me little joy. It served a purpose, but has become a functional and mechanical means to an end. It no longer matches the need. It was necessary, necessary to set a tone, a mindset, a discipline, and a new chemical baseline. But that work, it seems ,has been nearly completed and a shift is taking place. My body is telling me to eat joyfully and to turn that joy into flesh. But what choice of nourishment do I want to use to rebuild? Right now I'm leaning toward macrobiotic, but there are a few options I need to check out.
That inner Life Force is also telling me to begin to move and stretch against the pain. The deep fragile pain of the surgery is moving from my core into the periphery. I can cough without dread and lay for short periods of time on both sides. The pain is now in the left superficial chest wall and shoulder. The cutting of muscles and nerves from the surgery has caused my left shoulder blade to wing, and that's where most of my pain comes from, fighting gravity.
I am, in a profound way, experiencing "the healing process from the inside out,” and what an awe inspiring experience it is. Spirit, consciousness, and the physical, mixing and colluding toward wholeness . And each day is different. The changes are visible, and palpable, and life affirming. It makes me appreciate that It/All goes so much deeper than just skin and bones.
My support system is fantastic. Friends and family have taken wonderful care of me, and all of the well wishes, cards, and jokes constantly lift my spirit. Now that my daughter Jessica is home, I'm getting daily bodywork and acupuncture. I am such a lucky man to be so loved.
The planning session for radiation went well and I am scheduled to start a "short course" of radiation to my pelvis (which consists of five consecutive days) on December 20. Onto the next phase!
Update 6 (12/20/16)
Update from Gina
Rick stopped by the office briefly last week, Tuesday I think, on what he described as his "best day so far" following the Nov. 15 surgery. He is indeed a bit lean, as you can read for yourself in the most recent blog posting, but his strength is slowly returning and he is off pain meds. Today he began a short, condensed course of radiation therapy for 5 days, after which his surgeon will determine how to proceed with the pelvic surgery he's due to have following the radiation.
As always, feel free to contact the office for more information, or if you have need of treatment, there are a naprapath and massage therapist filling in for Rick in the interim. Blessings to all this holiday season,
Update 7 (1/30/17)
Hope and Trust
The house is quiet again, and with that quiet comes a return to the measured pace of healing. There is a stillness that now fills the void left by the departure of my son and daughter-in-law. For the past month they filled this home with high energy, laughter, games, and a variety of odors and emotions. They came halfway around the world to rally, with family, around me. Most humbly, they brought the gifts of themselves; their open hearts and their courageous vulnerability. I am honored and deeply touched by the love and healing they simultaneously delivered to, and most graciously received from me.
Now, more than ever, I am struck by how healing is a process, not an endpoint, and that it happens only within relationship. There is no clear demarcation between healer and healed, or healthy and dis-eased cells. There is only the eternal variation of Dynamic Process. Healer and healed, functional and compromised, are but reflections of processes in fluid continuum, intimately bound through energetic relationship.
The most powerful of relationships, the most meaningful and joyful, are experienced as love.
So, I welcome the love and strength they, and you, my adopted family, bring to me.
My strength has been returning with my appetite. I've gained 5 pounds and the intense craving for carbohydrates is leveling off as I allow myself more leeway. Five days of radiation are three weeks behind me, and I continue to ride out the roller coaster symptoms. Urgency and frequency of bowel and bladder are constant companions, and I itch like crazy, but the coldness I have been feeling for months seems to be subsiding as the corresponding cravings for carbohydrate fade. I interpret this to mean that my baseline vitality has been fed and is returning.
My supplement routine is not as routine as it was. It is shifting according to my symptoms and intuition. The titration of the medical cannabis oil increases on a regular schedule with the guidance from Dispensary 33. The date for the rectal surgery has been scheduled for February 10, and all appointments, including the marking for the ostomy bag, have been set. I think I have all of my ducks in a row, and just in time.
For the time is getting short and I can feel it pressing upon me. It feels like the approach of a big race; the excitement and dread, resolve and quiet focus .
One final push and the recovery can begin. It will be good to put all of this medical stuff behind me.
Is it ever truly behind?
There is always that doubt. I suppose that is the power cancer has over us. There are no guarantees, no fail-safe cures, no right course of action that guarantees an outcome.
There is only hoping and/or trusting.
Hoping that the decisions I have made continue to put me on the right side of the "percentage" and continue to make a difference.
And trusting that, regardless of my actions or the outcome, my circumstance plays out as part of a greater Unknowable plan.
It is an ever present conundrum; this willing into creation, coexisting with surrender to destiny. I am caught in a strange dance. Do I lead and maintain control, or do I follow and let go? Are they mutually exclusive?
I find truth in both.
So I go through my day hoping that my actions make a difference. It is with this mindset that I start the process of rallying my energy and focusing my attitude in preparation for this next stage.
I am moving toward my fighting weight, building my strength, and getting my Phelp's game-face on. It is all I have control over. This also means holding space for the love that surrounds me, because no matter which theology (self-determination or trust) may hold sway, both are rooted in the loving connectedness of ALL. This is more than a notion to me. It is at the core of my faith.
I guess this is my way of maintaining some power over my circumstances even as I suspect I am dealing with forces way beyond my comprehension or control.
Strangely, I am OK with this and find peace in the seeming contradiction.
Update 8 (2/9/17)
Well, the last doctor’s appointments before the last surgery were two days ago, and not surprisingly there were surprises.
But with repetition comes familiarity.
The surgeon was all business. He ran down his checklist efficiently enough that my wife, who has been taking copious notes throughout this whole process, could not keep up. He said he would be opening me up rather than doing it arthroscopically. The scar will start somewhere above my navel and run down to the hairline. He also said "unless you have some emotional attachment to your navel, I will remove that too," this to help control leakage from the ostomy bag. He spoke of all the side effects and possible consequences of the surgery: he could nick an organ, there is the possibility of follow-up surgical treatment for infection, and there could be damage to nerves that would prevent me from achieving an erection.
Only small things to consider.
Then I met with a hospitalist, a doctor who only handles cases within the hospital. Again, height, weight, blood pressure, but this time blood. I pushed through her resistance and insisted upon including a test for CEA. CEA is the marker for colon cancer. Mine has not been checked since I was first diagnosed, and no one but me seemed interested. It had not been ordered by the surgeon and she was very reluctant to run it. She called me two days later with the first positive news I have gotten since this process started. (Frankly, I have received no feedback about the progression of my condition from the medical community at all.) My CEA went down from 4.7 to 3.3. Above 3.0 is considered suspicious but the numbers run up to 100+. Whether this is due to the radiation, or my program is unclear, but it doesn't matter! It is a great boost going into the surgery.
The last appointment of the day was with the ostomy nurse. She put a purple, dime size magic marker spot a few inches to the right of my navel. She explained that this is the place through which they will pull a loop of my small intestine and attach a bag. All of my intestinal waste will be diverted into the bag thereby skipping the large intestine. The large intestine is where we reabsorb most of the water from our food and drink and package stool. Because of this, I will not be able to drink without eating something first that will hold water in the small intestine for a longer period of time. A glass of water taken alone will empty into the bag within a few minutes. For this reason, dehydration is a big concern.
I was told I could eat “all the pasta, white rice, white bread, and potatoes without skins” I wanted. I need to avoid anything with skins and fiber. No berries, nuts, seeds and seedy vegetables, fibrous vegetables, leafy greens with stems, whole grains, legumes or anything that is gassy. It will be an interesting three months.
I once said that I thought I had "all my ducks in a row," but now there are more ducks to consider.
Upon contemplation I've decided that I "am" emotionally attached to my navel. I have lost enough of myself through this process that losing something that I am so familiar with would be a reminder that I have to look at every day. I sent the surgeon a message indicating my misgivings.
And I will follow their instructions regarding the ostomy, at least in the beginning. I'm sure I will test its limits like I do many other things. I will experiment, learn and adapt as I go along. It will only be for three months. But the diet seems so contradictory to the overall goals of health. With this diet they are primarily treating "symptoms of the treatment" while feeding the cancer in a high sugar, high acidic environment, that is nutrient depleted. Intuitively, it seems so far off base. On one hand I understand the thinking, and yet on the other . . .
So this week I am appreciating, like seldom before, blueberries and strawberries, apples and pears with skin. Nuts, squash, fresh salad and greens, black rice, cabbage, broccoli, asparagus, artichoke, and water. I have begun introducing some cheese, bone broth, and eggs at the doctor's insistence, and my daughters are concocting congee (white rice porridge) recipes. It will be an interesting three months, but look at all the wonderful foods I have to look forward to.
When I return, it will be with a new appreciation for so many things!
Update 9 (3/9/17)
Moxa and Sage
The bed clothes smell of moxa and sage, hiding the tell-tale fragrance of alcohol wipes and unripe excrement. The houseplants are healthy, bringing life into the house. Sunshine streams for through the windows onto the bed. It's good to be home. Surgery and 11 days at Northwestern have taken their toll.
I'm just above the lowest I've ever been. The relentless gripping pain and emptiness left by the surgical procedure was more than I could have anticipated, and nearly more than what I could tolerate. Now the sensation of deep ravenous hunger is strangely coexisting with gluteus bloat.
The hospital experience was surreal. An offering at the throne of modern science and its ability to suspend nature and often common sense. A modern marvel nearly devoid of spirit except where it sneaks in on the personalities of the people who work there. I clung to these angels, seeking connection wherever I could find it. No one got away without telling their story and hearing mine. It's strange, but the greatest healing through human connection most often came from those who were the least paid.
I felt that as my body retreated and began to shut down less essential activity to conserve and focus energy to sustain life, Spirit/Life Force expanded and searched for sources of connection, human energetic sustenance. This, for me, is the true magic of life, and a lesson of this experience, and that the science is merely a hint at the way Spirit has devised to manifest itself. It is tomfoolery to think they can be separated and still function as intended.
(Five day gap.)
I returned home two hours ago from Swedish Covenant Hospital. I went in four days ago with a urinary tract infection/sepsis. Meagan was the push we needed to get there. Who knows what may have transpired had she not insisted. The culprit was klebsiella, a superbug bacteria that I probably picked up at Northwestern. Swedish Covenant was a more spiritually accessible and diverse hospital experience, but a hospital experience nonetheless.
My appetite is returning and I can once again almost feel the bottom under my feet. It's been a long few days. I once again came home with a catheter inserted (now my 11th). It is my nemesis. They don't know why my bladder won't wake up, so more testing will be done next week to find out why. This is going to be a long, slow recovery.
(24 hours later.)
I weighed in this morning at 144 lbs. I think that's the bottom of the slide. I began the process of crawling back into my body today. With Jessica's help and guidance I am eating every four hours and drinking in between. She even brings me little snacks.
I spent a large portion of the day doing self massage and stretching. I'm getting reacquainted with my body. That seems like a strange statement coming from me, but no body part seems to recognize another. They seem to require encouragement as they are re-introduced and brought back online; like teenagers at a dance, shy and tender to begin, but loving the gentle attention. When I was in the hospital I think that's what I missed most, the gentleness.
I'm beginning to touch and knead my under-used, sinewy muscles and the sagging skin. I've lost 48 pounds since September. The fur on my legs and the smooth bald patches left denuded from removing tape "multiple" times welcome the tenderness. I no longer recognize the feel of my abdomen with 45 staples, a stoma and the healing scabs from where tubes were removed and of course the swelling and tenderness. My body welcomes the touch. Touch, compassionate prodding, gentleness and reconnection have been the foundation of my practice, and now they find their way back to me.
I finished the evening with a good scrubbing and shave. I can't remember when I last felt this clean. My ostomy bag is fresh, and there is a cup of hot ginger tea at my side. All is right with the world.
Update 10 (5/20/17)
NEW POST UPDATE FROM RICK'S WIFE BARBARA
It is 6:45 a.m. on Saturday. We just came back from our 1/2 mile walk to get things moving. It was a long day yesterday. Rick got out of recovery at about 5:30 p.m.
I am so glad I went to school in the a.m. This surgery was dreaded by all in our family. The memories of our past experiences caused anxiety and dread as the days approaching surgery drew near. I had not been sleeping well and worked to hold things in (not wanting it to impact Rick with my worries). I stayed at school late Thursday night trying to get everything done and could not push past 11:-00 p.m. Leaving the house early Friday morning and coming to Goethe to work before the surgery was a good decision. I channeled my nervous energy, was able to get the unfinished tasks left from the crazy day and night before finished, and was able to give loving energy to Rick from afar. As the saying goes, "kill two birds with one stone." It worked. The nervous energy was channeled into productive work and by the time I got to the hospital, Rick had arrived and we were spot on prepping for the big day. We were in a good place.
Friday was long day for our family. We sat together telling stories and worrying together as the hours passed and Rick was not out of recovery. The surgeon had let us know early on that the actual surgery was successful. We were not worried about that, the surgeon is top-notch and a master at the technical. It was the aftermath that had been riddled with problems in both previous surgeries that caused such painful experiences. As the clock ticked on and we had no word from post op, our worries mounted. They finally called from post op at about 2:00. I was called to the desk and handed the phone. The nurse in post op informed me that the pain was not managed and things were not good and Rick would not be moved to a room until this was controlled. I went back to the family, gave them the news, and we all said in unison, "Here we go again!"
At 4:30, they approached the family as we sat gathered in the waiting room and asked which of us was the wife. We all immediately laughed, (how could they not know, we all thought) and then everyone pointed to me. The docent said, “They want you in recovery." We all looked at each other. My heart sank. My mind was flooded with rushing thoughts. As we walked down the long hall, I was feeling sick. The docent's words were a whisper entering my preoccupied state, "They don't usually ask us to bring someone into recovery, you are special. Special? I questioned. Yeah, right! What is going on? Dread and anxiety on the rise. "Don't cry, be strong, be calm, don't show worry . . . ” all these messages were like rapid fire with each step I took. “What was I walking into now?” I thought.
The curtain was drawn back, and there was Rick wide awake and calm! I heaved a big sigh of Relief! His pain was managed. He was joking with the nurse. His cheeks were rosy, he looked good, much better than me. My emotional guard relaxed from its heightened alert. The nurse looked at me and could read through my state of being and said, "He is fine! I wanted you to see him. We are now just waiting for a room!" Whew, one more bullet dodged. I turned limp and pushed back the tears and swallowed them once again.
Meanwhile, the rest of the family was still in waiting. I came out and gave them the news, answered all the questions, and they too took their sighs of relief. We were all in sync.
At 5:30 the transport took place and by 6:00 we all stood in room 1220 waiting for Rick to arrive. (1220 was the first room we were in after the February surgery. Coincidence? Omen? Or chance for a redo with more positive experiences? Only time would tell.)
As we watched the transport from gurney to bed, Rick cracked jokes. The room oozed of boisterous laughter that even drew in the attendant, nurse, and resident surgeon. Rick was in rare form. The surgeon said, "This feels like a party. Rick you have quite a posse!” Posse indeed! The comic relief is what we all needed! Thank you Rick! We were on the right track for healing!
The surgeon gave us the conditions for release:
1. No fever
3. Peeing (which we were all worried about considering our last experience with 16 catheters)
4. Passing gas
Okay, the mission was on.
They took the temp and no fever. Check
Rick had a good dinner, and ate well. Check
He peed! (We cheered!) Check
He walked. Check
We walked 1/2 mile first thing in the a.m. Check
He ate a good breakfast. Check
He peed. (yeah no catheter) Check
No gas as yet,
No poop as yet.
It is now 8:55. This is the update and Rick is sleeping.
I am hoping the gas will flow and pooping follows.
Funny how the elemental things of life come full circle.
When babies are full of air, and they release gas, everyone is happy. We measure how they eat. When they have their first poop, we are ready to change the first diaper. When they take their first steps we cheer them on. We are back to the basics, celebrating each of those markers. So goes the circle of life.
We wait, and wait.
Our hopes are to go home tomorrow.
We are keeping these hopes riding high.
So far, so good! 4 out of 6 operating @ 66% we are looking for that 34% so we can head home!
That's all for now folks!
Thanks to everyone for sending your good wishes. Keep them coming! We feel it!
Sending love to all.
P.S. Now at 11:45 with visits from the docs, another mile put in.
We are now at 5 out of 6 markers checked! One more check to go!
Tomorrow looks like it will be a Home Run Day! (Fingers Crossed!)
Feel our loving thanks coming your way!
Update 11 (5/31/17)
These last three months between surgeries have been what I had considered to be an uninspired chunk of time. I was waiting. Waiting for the next surgery, quietly biding my time. I felt stuck in a time warp. I lost track of the days. I couldn't conjure the energy to read and I couldn't even write. I tried dozens of times to get started but the ideas seemed uninteresting. They were a mere recounting of my days, documenting the small daily changes that were not very interesting or appetizing. How much can you say when your life revolves around eating and peeing and emptying your ostomy bag?
The ostomy bag and I never came to a comfortable understanding. Balancing food and fluid intake was always a challenge. As a result I was perpetually thirsty and every meal was calculated to balance the consistency of the bag contents. I regarded the bag as an alien appendage, a necessary tool, a means to an end; but I never really got used to it, nor did I want to. Like a baby, it became the central focus of my life as it demanded constant attention and changing. And like that baby, it also affected my sleep as I had to be careful not to roll over on it at night. I intuited this attitude was counterproductive to my healing process, but I just couldn't get past it.
My meditations were uninspired and my mood rather neutral. Each day trailed the one before it. I was in the doldrums, waiting for some movement, some inspiration. And yet, while part of me felt stagnant anxiety, there was an encouraging sense of burgeoning anticipation that was quietly ripening. Two very different realities once again coexisting.
With mental/spiritual preparation being so elusive, my focus shifted to preparing physically for the next surgery. I needed to get back the strength and vitality that I had expended recovering from the last three procedures. I emerged from the last surgery weak and depleted. I was surprised at the extent of the emptiness I was feeling. I realized that I was ill prepared for another trial. Reevaluation was in order. Changes were afoot.
I needed more protein so I started eating fish and chicken in addition to my protein drinks. While living with the ostomy I could not eat anything with a lot of fiber, or foods that created a lot of gas. That ruled out beans which made up a large part of my diet. I felt flesh was my best option. The vegan lifestyle I had enjoyed for 15 years was no longer serving me under these extraordinarily challenging circumstances.
I further prepared by walking. It started with half a block but eventually increased to as much as 5 miles a day. A couple of times a week I would go to the lakefront and pick my way among the rocks, "scampering" over the boulders. The obstacle course required irregular stepping up and down, jumping, and focus on balance which increased my core strength and built muscle in my thighs and calves. It was reassuring to see aspects of my old body reemerge. I carried small hand weights and exercised my arms and shoulders as I walked. I needed to regain my upper body strength to counteract the slouched posture I had developed in response to the tugging of the surgical scars.
By the time surgery came around I had regained confidence in my ability to heal. I was not unscathed but I was healing. I had gained 17 pounds and was once again sensing my innate vitality. However, there was a lurking sense of dread. Neither of the previous surgeries had gone on without complications. The chest tube and catheter memories were haunting me and their residual pain and dysfunction still palpable. Yet, this last should be the easiest of the surgeries. They were not removing anything this time, merely re-attaching . So why the anxiety?
The answer came through Barb from a psychologist friend and colleague: PTSD. That realization put the last six months into perspective. If anything characterizes this last half a year it is trauma. It was this epiphany that set the stage for the next phase.
Update 12 (6/1/17)
The notion that we (I say we because both my wife and I had/have been experiencing a lot of similar symptoms) might be suffering from PTSD, triggered something. This, coupled with a comment a neighbor made a couple of months prior. When she learned of the series treatments I had been through up to that point, she responded by saying "you have been at war, you are a Warrior." That comment stirred me and has floated in my consciousness ever since; a notion, like a butterfly, that drew attention but never alighted. When her comment blended with the diagnosis of PTSD I started thinking about trauma, torture, the brutality of war, and the code of honor that accompanies a soldier as he enters into it.
I was never in the military. I was spared that experience through the grace of a high draft number, but I now realize that the Warrior archetype is one that has strongly influenced me. My father was a Marine who battled through the Pacific theater during World War II. His experience, although seldom discussed, was part of the fabric that made up the environment I grew up in. The war was over but its reach crept into the lives of my generation. The black and white war movies we watched on TV with our fathers on the weekends, the war memorabilia packed away in the garage that we played "war" with, and the quiet, unspoken understanding that our fathers all seemed to share with a glance. It was all woven into the fabric of my generation and into me personally.
Courage, honor, respect, service, freedom, and brotherhood in the face of overwhelming odds, unfathomable horror, fear, pain, and inhumanity; these are Warrior qualities I have tried to live up to. In my own meager way I’ve always strived to bring my best and I took pride in rising to and handling a challenge. The challenge of resisting and managing pain, I realized, is a sustained theme in my life. It started young with training as a competitive swimmer and continues today with triathlon. I see its reflection in nearly every facet of my life. Pride in the endurance of pain is part of the Warrior's code and I realize that, for better or for worse, I have a long relationship with it.
Donning eyes of a Warrior also gave me insight into other ponderings. Since I started medical treatment eight months ago I have asked myself numerous times why I chose this particular path. There are so many options for treating cancer today. My Holistic sensibilities naturally lead me away from the destruction inherent in the surgical approach. My training and experience, friends, and the professional company I keep, all suggest I would choose a less invasive approach; so why surgery?
Then it came to me. As a Warrior, there was no other way for me to approach this challenge. From the very first cancer diagnosis, my first inclination was to remove the bees nest; clean, efficient, and decisive. With the cancer removed, the sword no longer over my head, I could put it behind me. I could return to some version of normal without the constant threat of cancer on my shoulder directing my life. I was, I reasoned, physically and willfully strong and had yet to find my limits; I would battle as a Warrior, and so the path was laid out.
I took what I knew as a Healer and blended it with the attitude of a Warrior. While plotting out the course for my medical interventions, however, I was not fully aware of my Warrior motivations or the true cost of the medical interventions. By the time I recognized this, the die was cast and there was no turning back. If I had realized sooner that the Warrior attitude was so prominently in play, or the physical price so dear, would I have done anything differently? This question doesn't haunt me, it holds no interest. What is, is, and that's enough.
The same goes for "why me?" Why does a person who has dedicated his life to embodying Holism by living a health conscious life end up with cancer? I am content with the notion that my cancer is due to prior unknown exposure and/or genetics. I am content with the notion that my lifestyle has had an unknown effect on why the cancer process has shown up now. I am content with my prior lifestyle choices and with the changes that have occurred as the result of this journey, and I am happily content to be carried by the current of this change. I am excited to see where it carries me, one day at a time.
Update 13 (6/22/17)
Don't get me wrong. I'm glad I've retained my anus, but for the last week it has been a real bugger. The fact that I still have it will make returning to "normal" life much easier, but for right now it's just a pain in the ass.
The history surrounding the type of surgery I've gone through is as long and convoluted as the organ it is designed to treat. There was a time when any cancer in the colon region included the complete removal and subsequent closing of the nether passage. This meant that one was sentenced to a life with an ostomy. Thankfully, these days, they try to retain enough tissue on the upstream side of the anus to reattach everything. They cite "quality of life" as if it's an afterthought, but I'm glad they have afterthoughts. This allows one to go to the bathroom in a somewhat normal fashion as opposed to having one's life consumed by caring for and emptying the bag five or six times a day. I have yet to determine what "normal fashion" ultimately means and I'm told it may be as long as two years before a regular routine is established. At this point I'm experiencing a change in symptoms on a nearly daily basis.
My emotions were all over the map when, in the hospital, I was able to urinate and have a bowel movement. Maybe that is an understatement. Worry that I would not be able to regain function was a big source of angst. The past two surgeries each involved complications. The rectal surgery and recovery took a particularly steep toll on me. I quietly fretted that this last surgery would also involve obstacles. Despite being as prepared as I could, I had been through a lot and I worried at how much more I could take.
You can imagine the relief when function started returning. A measured giddiness accompanied each successful trip to the bathroom and a happy dance worthy of an 18 month old's first successful poop was performed on my behalf by Barb. It not only meant that I could go home, it also meant that the worry I was carrying was unfounded. In those 24 hours, while function was returning, Barb and I allowed ourselves to exhale, at least a little. I don't think we had even realized we had been holding our breath for so long. I had not allowed myself the luxury of optimism, opting instead for caution. There had been too many disappointments. But now things were different, this time the optimism would not leave me wanting. The freshness of that optimism shifted everything.
I had no additional incursion to prepare for. I could let down in a way I hadn't for quite a while. I could finally allow; I could allow my body to heal on its own timetable, I could allow what is, to be. The hypervigilance I had been maintaining could be downgraded to DEF CON one. The post traumatic stress began to lose its edge.
I returned home this time with no medical accoutrement other than a gauze patch over a dime sized, 2 1/2 inch deep, hole in my abdomen where the ostomy was. They want that to heal from the inside out, so they don't completely sew it shut. Changing the gauze pad and managing my pain medication was all I had to do. This was easy, I was home free! Sometimes I can be so gullible.
The constant bowel movements have begun to take their toll as they move from water to solid. Although hemorrhoids and external rawness are a problem, the real focus of the sensation is at the reattachment area, about 2 inches north of the orifice. Internal burning is a near constant sensation that is quenched only for a while after a bowel movement. This is especially evident for an hour or two after I eat. During these times, the urge comes upon me about every 15 minutes. I also get some relief by laying down. I have been laying down a lot. Generally, bowel movements are imminent about every half hour and are preceded by cramping. When it starts, a tennis ball sized knot of spasm fills my bottom (and my consciousness) as irritation and burning from, what turns out to be rather small amounts of stool, initiate the process. The impetus and the response are not yet in balance. Again, I keep telling myself to have faith, know things will improve. Breathe.
If I were to personify my anus (don't laugh, the combination of cannabis and surgery have resulted in stranger things), I'd say the poor little fellow is confused. Three months ago he was put to sleep and behind his back, his environment was completely disrupted; the nerve supply was severed, 18 inches were removed, what was left was rearranged, and its function, by way of the stoma, was suspended by diverting stool before it got to the resected area. Now, after three months, he is being roused. He is, naturally, disoriented and a little pissed off. Who could blame him? Even so, righteousness can be very uncomfortable.
So, once again, l spend my days consumed by insistent bodily sensations and the realizations they unleash. It has been an interesting year for realizations; the kind that are brought on by trial by fire. I have discovered some of my limits and I hope I am a better person for it. I am less rushed and I have more patience (although this is a work-in-progress/process). I listen more slowly and intently, I look deeply into children's eyes when they are talking to me, I am less committed to my own rightness, I am less fidgety when someone else drives, and I am more grateful.
I'm grateful for the beauty that surrounds me and for the love that has been showered upon me. I am grateful for new and rekindled friendships, and deepened relationships. I am grateful for medical marijuana and for the bidet toilet seat. I am grateful for the outpouring of generosity that has restored my faith in mankind and has kept the office open, and I am blessed and humbled by the loving spirit I find myself a part of. Thank you.
Update 14 (9/8/17)
Many Happy Returns
It was the middle of September, nearly a year ago, when I was diagnosed with cancer. I don't know where this last year has gone, and yet I do.
Anniversaries are placeholders. Their function is to recognize the passage of important events. Forgive me if I don't have a cake with candles.
This anniversary has been strangely disorienting. On one hand I am coming to the end of what feels like a very long journey. The accoutrements of the medical world have been removed. There are no more bags or tubes or bruises or telltale adhesive. The holes carved into my body have mended into scars, and the medications are winding down.
On the other hand, this anniversary also takes me back to a time of unmoored confusion, a time of physical, emotional, financial, philosophical, and spiritual challenges. A time when it felt like my only anchor was the love and support from my family and friends. But what an anchor they were. I don't know where I would be without them.
I met with two oncologists last week for the first time, one for the gut and one for the lung. Since I have had no chemotherapy, there has not been an oncologist on my case. Now that the interventions are behind me, the task of the monitoring falls on them, hence our first meeting. As the pulmonary oncologist collected my history from the past year she said several times while shaking her head in disbelief "for all that you have been through, you look great." She did not say this in a patronizing way but seemed genuinely surprised at my condition. This interchange stood out as unusual to me. I find I have been getting the same reaction from those who haven't seen me in a while. I'm not sure what they expect, but me looking so "normal" seems to be surprising. That surprise is motivating a shift in me.
The comments, coming from my doctors and those of you who actually know me, hold truth. I can see it in your eyes. The sentiments are genuine, your relief upon seeing me is palpable. I look like my old self and that is not what you expected to see. It is a truth that I am slowly coming to accept, a truth born of outside perspective and the willingness to embrace that perspective. I am healthy and it shows. You are announcing that with your reactions. Now I am faced with how to live into that truth.
I'm finding it difficult to shift from a convalescing mindset to a "normal" mindset. But then I'm not sure how much of the old "normal" I want to retain. As I return to limited hours in the office, I am finding the rhythm of my life speeding up. There is a rush, a quickening of mind and body. My idle runs fast. I breathe shallowly and more from my chest than from my belly as my shoulders tighten as my head migrates forward. I also talk more, but maybe that's just me. This is an unsettling contrast to the past 10 months when my focus was gentling down and letting go.
Within a few days of the rush l generally experience a crash that demands more sleep. This indicates to me that I am still healing and need to have patience with my healing process. But more importantly, it highlights how easily stress siphons life energy from me. Awareness alone is not enough. My challenge will be to discover a new, less stressful and more peaceful "normal" as I resume my former life. Many precious gifts of insight and love and opportunity have revealed themselves to me along this path and I don't want to lose them to the "old normalcy."
I more than appreciate that opportunities to redefine one's life are rare and that I am being presented such a gift. It is a gift born of ordeal but realized through changing perspectives and attitudes. I don't yet know where I am being carried or if there is even a destination, but I know things are changing. (continued below...)
Update 15 (9/8/17)
(...continuing from above)
The pillars of my life have been shaken. I sense they now stand slightly askew and a bit battle worn. Strangely, however, l feel they are more firmly anchored, as if the bedrock beneath has shifted and with that shift a falling into place.
Once held convictions have become less black-and-white; less substance-tial. I intuit I am part of an inconceivably dynamic process of change. This process acts upon and draws from every dimension. I sense that my life is in ever shifting dynamism that only appears solid. The healing process I am currently enjoying reveals this unsubstantiality. Weight loss and gain, the knitting together of incisions, the slow return of most of my old and familiar sensations, and death. All highlight the transient nature of life. The seemingly solid structures of my perceptions are melting as they are continually being replaced and molded by other influences in the process. It seems that nothing is solid but in constant transition. I am a bit confounded and intrigued by this process, but unafraid.
Because of this awareness, I have developed a strange comfort/trust in the Unknown, and a strange mistrust in my worldly thought processes, philosophies, politics, and science. The world has become more translucent with soft, permeable, and indistinct edges. I have never been more aware that I don't know what I don't know, and sensed the magnitude of that ignorance. At the same time the awe and reverence I hold for that Unknown grows exponentially.
I have come to realize, just how good a body l have. It has made a recovery that astounds even my oncologist. I see old familiar contours emerging through and filling out my flaccid skin. I have gained back 32 pounds of the 50 I had lost. My body is regrowing itself from memory and it somehow remembers what I looked like! Life force working through DNA, activity and mindset seems to be the engine through which raw nutrients are used to reconstruct the body. The miracle of life, like the magic of summer fireflies or the sparkle of gently falling winter snow, would be inconceivable if we did not experience them. But what has most captured my imagination is that memory. How does it know how to rebuild what it was before, and with most of its old familiar traits? It does this even though a substantial chunk of its previous structure is missing. It's really quite astounding.
I also realize how well my lifestyle has served me. As I distance myself from the challenges of the surgeries, I find my healing to be rapid by normal standards. At least that's what I am told. Maybe it was lifestyle that set the stage for my recovery, maybe my genetics, or maybe it was just dumb luck that has restored me. I know it's probably a combination of factors, most of which I am totally oblivious to. I chuckle when I realize it is only through my ego that I choose to think that my lifestyle had anything to do with it. If you'll allow me, I'm going to stick with that for the time being. I guess I am still seeking control.
I am renewing my trust and patience in the healing process. I have become much more aware of cyclic changes and the time these changes take to bring me to the next level of healing. These changes are predictable but seem to be on a timetable all their own. I find that I cannot control my healing directly, but my mending tissues and spirit are the happy focus of the process. I realize that my healing is part of a greater process of flow. It moves ahead reliably without my intervention, however, I suspect it is influenced by my attitude and actions.
So here I am being carried back toward my old life, a cycle nearly completed. Trepidation is being cautiously replaced by the excitement of my return. Fresh eyes and new interpretations are taking their place in my awareness and are quietly remodeling my paradigm and I am experiencing ancient life essence and wisdom through the process of my healing. I am, at once, ancient and new.
I am grateful.