My friend Mela says I signed up for this a long time ago, several lifetimes perhaps, in a book I don’t recall and in a place I don’t remember. She believes in reincarnation, that we come back to learn things, important things, necessary things. If so, I would be interested in making the argument that we should at least get to remember what we learned in previous lives. It is only fair. I cannot argue for or against reincarnation. I simply don’t know. I can see the utility in recycling souls, imagining that God made a finite number of individuals(souls) to fill the earth, though I admit to finding it a bit difficult to grasp in light of the ever increasing population data. And I have met people I consider ‘old souls’, those who reflect knowledge and wisdom well beyond their years or experiences. Chris and Patrick were ‘old souls’, but I’m not sure it was based on a previous life, rather a greater understanding of the value of life.
I also understand the concept that it would be interesting (fun perhaps) to come back and live another life. I would like to be on Broadway, but I would need beauty and talent. Probably a big ASK for whoever is in charge. But if I actually signed up for this life – losing two sons to Duchenne muscular dystrophy, caring for my elderly mother, and my husband’s recent diagnosis of cancer, in my previous life I must have been on drugs or drunk all of the time. At minimum, I failed to read the small print. If God was a woman, I might consider asking for a ‘do over’.
Tom and I have spent out careers in medicine, family physician and nursing. Typically, we sit in chairs with arms. We are the authority, the individuals capable of giving advice, giving support; trying to help patients and families wade through difficult situations. In every situation, we do our best to promote health and hope. We recommend screening programs. We are proactive about our own health and the health of everyone around us.
June 22. (1/28; 1/180) Text message from Tom: “I have just been hiroshimad [sic] and currently am having an agent orange cocktail without any problems”. It is day 1 of 180 days of the recommended treatment regimen for rectal carcinoma.
It is surprising that you get up every day, expecting an ordinary day, filled with ordinary or regular activities. And on some days, a single word breaks through ‘ordinary’, sending the world you know into an unknown orbit. I thought I knew about medicine. I thought I knew this world pretty well. I had the sense that I know its shortcomings, since the diagnosis of Duchenne, and once again I am reminded I know it from one perspective. I am one of those individuals sitting in the chair with arms, the position of confidence. I have had much less experience sitting in the chair without arms, the chair where there is no place to hold onto and nothing to keep you steady. It is this chair where the defenseless people sit, those who are on the receiving end of information, those who hear confusing and conflicting words all wrapped up together and try to sort through a new reality to find a place of solid ground.
I’m part of the generation referred to as "baby boomers,” the ‘sandwich generation’ charged with caring for aging parents and caring for ourselves at the same time, defying the opinion that age and productivity are related, that young is good and old is, well old…outdated, past the ‘use-by’ date. Baby Boomers take care of themselves, follow the rules. They maintain their youth, exercise their brain, continue to work, have routine health screening, and exercise. It works, until it doesn’t.
Routine colonoscopy. Simple procedure. The preparation is worse than the procedure. Mild sedation and rest and life returns to normal. It’s Tom’s turn and I’m there, this time, sitting by his bedside, the chair without arms. It feels a bit unsteady as the physician approaches to report to a still groggy patient. Smiling he says “Procedure was no problem. A little diverticulitis, removed a few polyps." And then, the smile disappears and his eyes look down at the bed, “On the way out I noticed a small suspicious lesion… I could not visualize it as it was under a fold. I was able to biopsy and will call your office to let you know. If it is ‘something’ we have it removed surgically. If it is ‘nothing’, a slightly different procedure to expose the lesion and remove.” Holding onto his last words ‘nothing’, we leave the hospital, but the word ‘suspicious’ has been planted. Message received.
In the middle of the day, several days later, the call. “Suspicious’ lesion is adenocarcinoma. The dreaded C word. But there’s a qualifier, an assumption. Tom is a physician, in good health, routine screening, no history, does not smoke, exercises. I am sitting down and the chair has arms, but these arms are not strong enough to keep me from shaking. It is suggested to be ‘in situ’, confined, early, curable. Something to hold onto. Discussions related to surgical procedures enter the conversation. Laparoscope, a minimally invasive procedure versus abdominal incision with several days in the hospital and several weeks recovery. These are easy discussions with surgeons as they are quite comfortable talking process, methods, technique.
Surgery is a skill and art. Surgeons are a breed –cool, calm, collected, confident. The choice. Abdominal surgery. Better visualization. The word ‘suspicious’ comes to mind. I’m already on the ‘maybe’ tangent. Maybe they have elected to do abdominal surgery because Tom is a colleague and they are being proactive. My ‘maybe’ says it is something more. I’m standing for this call. I’m wearing sturdy shoes, but the ground feels less solid.
Surgery is scheduled. Three weeks off work, tumor removed, time to repair, life returns to normal, ordinary days. It is the day of. The anesthesiologist is assuring. The surgeon is confident and we wait for the call that surgery is complete, tumor removed, the ‘all clear’ sign. We are given an electronic buzzer as if we are waiting for a table in a restaurant, but this time the buzzer signals surgery is complete and the surgeon is ready to report. Several hours go by. A few snacks, light conversation underpinned with anxiety. The buzzer starts to flash. Funny how the atmosphere changes the message. This time, the flashing light feels a bit frantic, even frightening. We are ushered into the private meeting room. This room has a couch and several chairs. All chairs have arms, boxes of Kleenex within arms reach. The room is prepared for bad news. We sit. The surgeon walks in, stands just inside the doorway. It is pretty clear the next case is waiting. We stand. The surgeon greets us and looks at some central point in the room. There is no eye contact. “Surgery went well, no problems.” “What did you find?” “I removed the tumor.” We are playing tennis, lobbing the ball back and forth “But you must have seen many tumors of this nature, what did it look like? Could you see any obvious invasion into surrounding tissue?” “I did the surgery, removed the tumor and surrounding tissue, removed about 12 inches of colon.” “Is this typical? Did the colon look normal? Did the tumor appear confined? How many lymph nodes did you remove?” “Enough, I made sure to have clean margins.” “How can you sure you have clean margins? You must have taken a good look at the tissue…did it appear abnormal?” Pause. “You will need to wait for the pathology report.” “Please give me some insight." “You will need to wait for the pathology report.” “How long for the path report?” “3-5 days and we are heading into a weekend.” “Is it possible to expedite the process?” He’s finished with this conversation. “You will have to wait.”
There is a silence in medicine, the surgeon looking past you or speaking to the floor that tells the story and while it may be the ‘cover your ass' approach so common in medicine, it is in this silence that patients/families understand the gravity of the situation.
Each morning the surgeon looks in on the patient. The regular banter of patient and physician. “how are you feeling?” "Better.” "Wound looks good; heart and lungs clear. Any problems? We’ll start to feed you when bowel sounds return.” "Great, ice chips have little appeal." “Right, but we need to hear bowel sounds.” Standing by the foot of the bed, holding onto the bed rail, I ask, “Did you see the path report?” I realize I am frustrating this physician. “3-5 days.” No eye contact. He is on his way to the OR. “My partner will be in over the weekend. If you need anything, just let him know.” He’s an expert at exits. He looks at his watch, clearly a busy man… and he’s out the door. I hear a sigh as he rushes down the hall.
It’s Saturday, the partner arrives. It’s a ‘drive by’ patient visit, head just inside the doorway visit. “Doing ok?” Subliminal message, I’m not your ‘real’ doctor, just here to make sure someone sees you, this is post operative protocol. I’m on my feet again “Path report?” Pause. “I did not check the chart.” “Why?” Pause. “Because it is the weekend and if the path report is not back, it will be here on Monday." As in, then it is your doctor’s problem. I’m standing straight, feet planted, staring directly at this young physician. “If you don’t mind, please read the chart, see if the path report is back.” Head drops, he leaves the room, returning minutes later with the doorway diagnosis and in one breath reports. “Path report shows 5 out of 14 positive lymph nodes, you need to see the oncologist, have a good weekend.” In the space of 15 seconds, he handed down the diagnosis and prognosis. It was all contained in the empty space between his words and the doorway as he rushed away. Tom closes his eyes. I sit on the couch in the room. There is no comfort here.
Google “colon cancer” and you get 10,500,000 hits. Seems there is a glut of information out there. Success stores abound, a vast amount of research, significant investments, clear recommendations and ‘cookie cutter’ regimes for specific types of cancer. There is, apparently, an arbitrary line that differentiates colon cancer from rectal cancer. It is a line drawn at 14 cm. Above 14 cm in the colon, the diagnosis is Colon Cancer. Statistics are better than years ago for sure, depends on the variables called TNM. T describes how far the primary tumor has grown into the wall of the intestine. N describes the number of positive lymph nodes. M relates to spread to other organs (metastasized) or in medical jargon ‘mets'. The tumor is staged and statistics suggest 5 year survival rates. Stages are 0-4, each stage with qualifiers and in this case, we are talking about a 3c. And while this algorithm becomes a bit more understandable, treatment and opinions vary considerably. At the end of the day, options are outlined and decisions are up to the family. We still find that we are sitting in the chair with 4 legs and no arms, guided by statistics and evidence, but little comfort and the words Stage 3c are on a loop repeating in my head. Doctors often fill the space with words. At least it is not stage 4. I hate sentences that start with “at least.”
Oncologists lay out plans. The lesion is 11 cm., considered ‘high’ which means the lesion is in the gray area, the area where some experts treat as colon cancer, while others treat as rectal cancer. Treatment is different for rectal cancer because apparently rectal cancer has a tendency to recur in the same or nearby area. For this reason, recommended treatment is radiation and chemotherapy, a drug called 5FU, added ammunition to sensitize the tissue in the area to improve uptake of radiation. In fact, in hindsight, if we realized the tumor was invasive, radiation could (should?) have been done in surgery. Unfortunately, I am not equipped with a time machine and cannot turn back the clock. “So, the recommended approach is first local, the combination radiation and chemotherapy, followed by a short respite and then systemic, folfox6 modified or oxaliplatin/leukovorin,5FU, a combination platinum based therapy.” “Yes, but there is another opinion based on the fact that this is a ‘high’ rectal lesion and in this case, recurrence is less likely, aggressive systemic therapy is recommended, radiation is not needed." Clear as mud. Practically speaking, it makes sense. Twelve inches of colon removed, 14 lymph nodes. They got it all, right? Because 5 nodes were positive, there is some suggestion that metastasis has occurred. CAT and PET scans are taken, read as clear, but there is the issue of rogue cells, cells traveling throughout the system that even the most sophisticated technology cannot visualize.
“How does all this work, what can we expect, what side effects?” THE PLAN. It’s a script. We all learn it as we go through medicine. Paint the picture for the patient, make sure they understand worst case scenario and give them hope. You can’t have it both ways. Interpretation will be one way or the other. Radiation and Chemotherapy( 5FU) are ‘relatively’ easy. Relatively easy when compared with what, I wonder? Side effects may include diarrhea or urgency, but this will stabilize some over time. “How much time?” “Not sure.” 5 FU is 24 hrs/day, 7 days/week. Some nausea, vomiting may occur. We tiptoe around in this discussion, the physician presenting worst case scenario with the caveat that “some patients go through without any side effects.” We hear the subliminal message. Rough road ahead, no escape.
No matter what the regimen, Tom needs a port, better known as a port-a-cath, a small medical device that provides access to the venous supply of blood for delivery of medication, in this case 5FU and later Folfox6 regimen. Another surgical procedure, this time simple, mild sedation. Same scenario as before. Anesthesiologist reassures me, Tom is in good hands. Surgeon will contact me following the procedure. Same surgeon, different day. No need for questions. He has no answers. Indeed, this time, I am escorted into a little room, comfortable chairs with arms. A tissue box on the table. The surgeon enters, sits down, crosses his leg. Relaxed. We have eye contact. He smiles. Easy procedure. Port is in place. Tom did well. Smiling he describes how it will be removed at the end of the treatment regimen, 10 minutes, local anesthesia. No sweat. Any questions? Just two. “Will he be able to tolerate this treatment? Will he be one of the success stories?” Eye contact is lost.
Day 2. “No problems, day 2. Expect changes at 10-14 days – if they occur.”
Day 3. #3 radiation treatment complete.
Day 4. radiation treatment, pump working (5fu –leukovorin). Attempting to find a comfortable sleeping position with my new ‘friend’
Day 5. First week complete. 5 out of 28. needle changed on port
Day 6-7. Weekend is here. Nothing major but the tubing serves as a constant reminder
Day 8. #6 radiation treatment
Day 9. # 7 radiation treatment. Exhaustion setting in. 4 hours of additional sleep would feel good. Flu like symptoms in the morning, cleared by afternoon.
Tom started off the day with flu-like symptoms. He did the radiation, rested for 20 minutes and went to the office. By mid-day he was improving and felt well when he arrived for dinner. I have no idea if this is to be expected or if simply getting on with the day, or that getting to work raises the endorphin levels sufficiently to overcome at least some of the symptoms. Tom wants to work. At home he paces or he takes a nap, which reinforces the fact that he is sick, he gets up, he paces around, goes to his computer, Googles a cancer related site and I find him, head in his hands and I am certain he has been weeping, but he looks up and pretends he is just fine, simply doing his charts. A great cover. After the boys diagnosis and death, we are both quite expert at hiding tears.
I am trying my best not to comment. I find words right on the tip of my tongue and bite hard not to say anything. If I say 'rest', I am feeling sorry. If I say 'don't rest', he interprets it as anxiety about finances. Words. In catastrophe, they are bombs.
I am trying my best to have really good dinners and watch tv with him just before he goes to bed. I keep wishing for a guidebook
Day 10. #8/28; 10/180 radiation treatments. Early AM nausea.
Tom is just now beginning to feel twinges, instances or moments of side effects, a little nausea here or there and daily fatigue. Like all catastrophic diagnosis, there are times when we are talking that we are able to forget about our new vocabulary - cancer, ports, radiation, 5FU, leukovorin, Folfox; that life continues as it was, taking care of mom, talking about Jen and Mush, juggling schedules and figuring out what's for dinner and who will be in charge of making that happen. And then, all at once, I see the tube from his pocket and threading into his shirt, the reminder that we need to work hard to maintain this fragile peace.
Day 11. #9 /28 radiation treatments. Overwhelming fatigue and diarrhea. I encouraged Tom to go dancing. It has been the single activity that lightens his heart, makes him smile. He refused, worried about the pump, the tubing, the diarrhea that seems to follow him around now. So, it’s my turn to pretend I am interested in becoming Middletown’s answer to Cyd Charisse. Tom agreed to accompany me for the 45 minute lesson. As he danced, I could see the fatigue, but it was a different kind of fatigue and a smile now and again. He said I did well. He the teacher and me the student. He slept all night without interruption. I found myself staring at the pump.
Day 12 -14. Holiday weekend. Radiation facilities are silent on holidays and weekend and while I am sure there is evidence to suggest days off do not create negative impact in terms of outcomes, but I do have to wonder if the cancer cells realize it is July 4, Independence Day, and take a holiday from their destructive course. Diarrhea is now part of everyday life as we try to learn what foods and in what amounts increase or decrease the urgency. Tom has gotten into a rhythm and for lack of a reasonable description, it might be referred to as the cancer rhythm. He is up by 6 AM, has a bit of breakfast and back to bed; up for lunch, follwed by a short rest, maybe a bit of exercise, dinner and rest, a bit of TV and back to bed for a regularly interrupted night. Interruptions include diarrhea and bladder irritation complements of the radiation.
Day 15. #10/28 radiation resumes and Mondays mean the needle is changed for the 5FU influsion. Blood is drawn. White count is slightly below normal. Txt: WBC 4100. Panic seems to accompany each day. The physician suggests this is a ‘low normal’ value and at the moment, nothing to worry about, but it is LOW normal nevertheless, an ever-present sign that the side effects are snowballing.
Day 16. #11/28 Radiation, rest, office, lunch, rest, office, dinner rest, charts, bedtime
Day 17. #12/28 TXT: I’m like an old man, centering all activities around the distance to the commode.
Day 18. #13/28 TXT: Dancing at 8:15. Anything for a smile. I know the drill, I have walked this path before. Docs have suggested that the more ‘muscle’ you bring to therapy and maintain during therapy, the better the outcome.
Day 19. #14/28 Fatigue from the week is obvious in the way Tom walks, though it is a milestone, ½ way through the first cycle of treatment.
Day 20. (July 13). #15/28 20/180 160 to go. I have to track the timelines in various ways, convincing myself of progress, convincing myself that this insidious treatment has a beginning and an end, convincing myself that, with luck, we will cross the finish line. Txt: Radiation, blood work, needle change, rest, work, lunch, rest, work, dinner, rest, bedtime.
Day 21. #16/28. Why is it that information comes in ‘bits’? Today, the oncologist said that these next two weeks of radiation/chemo would be the worst, that we should expect side effects to increase significantly, that perhaps Pepto Bismol might be better than Lomotle.
Day 22. #17/28 radiation, hospital patients, rest, lunch, rest, office, rest, dinner bedtime.
Day 23. #18/28. I always smiled when my 93 year old mother organized her day around the location and availability of a private bathroom. It is becoming Tom’s way of life as well.
Day 24. #19/28. 9 radiation treatments to go, 2 weeks and Round 1 will be complete.
Day 25/26. On weekends, no radiation, only the constant reminder, the tiny little iv tubing snaking from his pocket to the open space between the buttons of his shirt, delivering 5fu into the port.
Day 27. #20/28. It’s Monday, 9 treatments to go. Side effects have not dramatically increased. Hard to know if this is a sign or if the worst is yet to come.
Day 28. #21/28. Information in bits. Oncologist who said ‘no supplements’ now recommends L-Gutamine to improve absorption in the gut. Who knew?
Day 29. #22/28. Counting down.
Day 30. #23/28 Big dinners and radiation don’t mix. Taking dance lesson by myself or am I trying to run away?
Day 31. #24/28. Tom is pale or is he? WBC 4100, low but not horribly low. Staying stable. Radiation has caused pain the bladder as well. Sitting on hard chairs is impossible.
Day 32/33. Tom is restless on weekends, trying to accomplish small tasks, but finding fatigue washes over him.
Day 34. #25/28 needle change, 4 treatments left.
Day 35. #26/28 radiation, hospital patients, rest, office, lunch, rest, office, dinner, rest, bedtime. Better known as the Cancer routine, .
Day 36. # 27/28
Day 37. #28/28. TXT: Last time to have my ass in the air while a computer calculates position for the x-ray. Round 1 complete.. Feels like we have a ‘get out of jail’ card, but this one is temporary. 4 weeks rest and Round 2 begins.
Day 38. Freedom. No IV, no radiation. Side effects present, but not horribly different than earlier. Tried to do the dance lesson and party, but lasted only a short time. The fatigue is still present and pretty overwhelming. It does feel good to have completed this round, physically and psychologically there is change.