HAP

Thank you all for your kind words and gestures. I am wrestling with several things, not least of which are the questions raised by the "S word, L word" post that I am not sure how to write about. i keep starting but then throw it away. Peace, Harry

Be well, Mary. I will hold you in my heart and in my mind as you go through this day. Harry

Dear friends, I will be on Sirius XM Radio's medical channel, Channel 81, from 12:30 to 1 p.m. to talk about carcinoid/NETs--the cancer that killed Jane--and the work of Walking with Jane. I was at UMass Boston tonight for a scholarship dinner. The student speaker was one of our last students. She graduated in June of 2010, graduates from UMB in December, and plans to go to medical school. Peace, Harry

Dear friends, I disappeared for a few days to let my mouth heal. It's hard to believe how tired I found myself by Thursday night--and I had done nothing at all really since the surgery on Monday. I slept about 12 hours and feel much better than I have. I went to the Jimmy Fund Walk brunch this morning with my SIL, got back about 3 p.m., wrote for a bit, and find I need another nap. Other than that, I seem to be very much on the mend. It never became as painful as they told me it might. It hurt just enough that I had trouble sleeping solidly at the start--what I think they refer to as low grade pain--just enough to be annoying. I'm still on soft food for at least another week, then they take the dressing off. The speaker at the brunch, an Hispanic woman who lost her son to cancer two years ago after two bone marrow transplants, said something very moving. She has gone back to school to learn medical Spanish so she can help those for whom English is difficult better understand what their doctors are telling them, because, "Cancer speaks all languages." She left me--and many others--in tears. I also ran into the woman I talked with at last year's event. She described, then, a lot of symptoms that were similar to what Jane went through. They found a serious tumor in her intestine last fall, which they removed--and they think they got it all. It was not carcinoid, but she thanked me for encouraging her to keep looking until she found a reason for her symptoms. It was a wonderful day--but emotionally exhausting. Kay, I was so glad to hear the roof was finished, but can't believe the size of those truss members. Mary and Mary and Fae, I worry about you guys and your various colds. I hate chest colds especially. What you describe sounds like what I had in January. I hope the warmer--soon, please, soon--weather will lead to quicker recovery for all of you. We are getting ready for a BIG storm along the coast here on Tuesday night into Wednesday--8-12 inches of heavy and wet. Yuck. Winter does not seem to be going anywhere--and we are expecting HIGHs in the 20s tomorrow. Brrrrrrrr. I expect I will continue to go slower than normal next week again, though I seem to have a bit more energy this weekend than I did. But I will heed your various imprecations and listen to my body. Peace, Harry

Dear friends, While I am still a little tired, the day three discomfort they told me might happen has so far held off--touch wood. I will stay low-key today, though I will likely do some laundry. What can I say? I like clean clothes. But everything seems largely on the mend. Peace, Harry

Dear friends, After 24 hours of self-induced hypothermia, I am finally finished with the icing regimen. It may take me the rest of the day to warm up, but that's OK. I have no real physical stuff planned for today. I'd like to make a run to the bank and the PO later, but that may keep for tomorrow. That will depend on how I feel later in the day. I had my dermatology check this morning on the healing of the basal cell skin cancer I had removed last month. The appointment took under five minutes. It looks fine. I go back in August for another check-up. Between doctors and dentists, it's been a busy two months. I have to call my regular dentist this morning to bring them up to speed on the surgery and see whether or not this has an impact on my March 25 appointment to replace a crown that has chipped. It is on the other side of my mouth--the one I am allowed to chew on for the next two weeks or more. I had to cancel my lobby day visits for ACS CAN on March 31 as that is the day they want me back in the dentist chair to check on the grafts. I told them to send me the stuff and I would meet with the rep and state senator down here either before or after that. It spares me a trip to Boston--which is both blessing and curse. Mary, Jane loved Irish music. Good thing as I used to sing it in bars and taverns as a student when I needed the money. Our tastes in music were pretty eclectic. I doubt I'll ever listen to her Irish CDs again, but I can't bring myself to give them away. And who knows, I can now listen to a weekly radio show of Irish music we used to partake of regularly, so there may yet be hope. Peace, Harry

Dear friends, Would that I could just nod off, but the icing schedule is the critical piece today--or so they tell me. So every ten minutes I let my face rest, then hold an ice pack on it for 20 minutes, then ten off. That's the deal until about 10 p.m. tonight. Then, tomorrow, I go in for a follow-up on the skin cancer healing with the dermatologist. Then more ice until 10 a.m. I am bored beyond words. I get 10 minute bursts where I can type effectively. And even reading is tough with the ice pack on my face. So I will watch some comedy reruns shortly. This is going to be a few low-key days. And I am on soft food with low acid content for at least two weeks--and maybe longer. Yuck. But the pain is negligible--and that is a huge positive where I'm concerned. Peace Harry

Novocaine has worn off. Still on the icing regimen. No pain, but it itches. Yogurt is already old, so I've boiled some eggs for egg salad--egg and mayo only--for later. Will take more Motrin at 4 p.m., but the codeine can safely stay on the shelf for now. --H

Dear friends, Surgery went well. Am sitting in my recliner with an ice pack clamped to my cheek 20 minutes on 10 minutes off for the next 8-12 hours. Novocaine has not worn off, so there is no pain--and don't really expect much before tomorrow, though they said day three or four is usually the worst in terms of discomfort. I have my painkillers lined up if it comes to that, but would prefer to stay away from the tylenol+codeine. Peace, Harry

Dear friends, Two photographs jumped onto--and off--the wall at me this morning when I got up. The first is a topiary I have been working to recreate since Jane's funeral. She had grown a heart from an English Ivy over the course of our marriage and it was the only houseplant we lost while she was in the hospital. I took the form it had grown on and found a bit of English Ivy in another pot and began it again. It has become a symbol of my healing heart since we buried her body. The quality of the light striking it this morning was so beautiful I wanted to capture it. The camera did a poor job of capturing that light bouncing off the leaves, but the photo got me really looking at the heart for the first time in a while. It is fuller than it had been and has begun to curve down the last piece of wire. The wound is still there, but it is closing. It remains a good symbol of where I am. The light striking the plant was coming through the hexagonal window over the front door. That light was not finished when it struck the plant. It painted another image on the far wall: the shadow of the window frame, the reflection and shadows of the chandelier that lights the entry, and the shadow of the plant, its frame and the pot it grows in. Again, the camera didn't catch that painting exactly as I saw it in my mind, but it, too, reflects something about the state of my mind. The entire thing was framed by the reflections coming off the chandelier--they created a halo around the light and shadow in the photograph, but the thermostat and light switch undermined the image. It was a good way to start the day. Peace, Harry

Dear Mary, Much lower key day planned for tomorrow: some reading, some writing, some meditation and an early night. My back is not really happy with me tonight. Peace, Harry

Dear friends, Two DIY projects done today. The first was easy: the front end of the house now is 100% LED lighting. The bathroom, bedroom, guest room, library, basement and garage are still on CFLs, but the incandescents are all gone. This was thanks to a deal at the Fall River Home Show on LEDs: Three LEDs and seven compact fluorescents for $10. I needed a bulb for the recessed spotlight over the sink. It was $5 for a $40 bulb. I still have all the fluorescents because I didn't really need them, but the regular LEDs would have been $10-15 each in the store. I'll just have to find someone who needs the excess. The second was a nightmare. About 12 years ago we had to replace the faucets in the kitchen and bathroom. I bought what were supposed to be forever faucets--no washers etc. The bathroom faucet started leaking about a month ago--maybe a cup every few days, but enough that it needed to be fixed. The kitchen started to drip about a drop an hour two weeks ago. So I bought a new faucet for it when I bought the new one for the bathroom. Today I decided to replace the one in the bathroom--and if it went well, I'd do the kitchen while I had the tools out. The kitchen never happened. It took close to four hours just to get the old faucet out. The lock nuts that hold the faucet in place had fused to the feed pipes at the base of the faucet and would not budge no matter what I tried. I ended up taking the entire faucet apart to get it out. The new faucet is in--at last--but I have no energy to even think about the one in the kitchen. And it is the same design as the one in the bathroom was. I'm terrified I am going to face the same nightmare getting that one out. At least I'll have a clue what works and what doesn't on that one. But the good news is the bathroom faucet is replaced and that 1/2 cup of water is no longer going down the drain every day. I'll take my victories where I can get them. Peace, Harry

Dear Anne, I managed to chip one of my porcelain crowns earlier in the month--and they tell me it will have to be replaced, as well, later in the month. I feel like I am paying someone's tuition the way this is going. I don't particularly care for the dentist chair routine either, but with the fragile, brittle teeth I was born with I've had to get over my fear of dentists or let them all fall out. Thanks for your concern Kay as well. I'll be thinking of your roof this weekend and hoping there is no heavy damage underneath. It's getting late here in the East. Time for some sleep. Peace, Harry

Dear Mary & Marty, I look at this the way I look at my basal cell skin cancers: minor annoyances in the great scheme of things. Heart surgery, breast cancer, major home repairs, dementia...those are crises that require huge focus and energy that are truly taxing. I don't count myself as a cancer survivor because I know people who really are--and freezing off a bit of skin every year or two just doesn't count for me by comparison. I've seen heart surgery and its aftermath. Having a tooth removed and a gum rebuilt just isn't in the same league. That said, Marty's father is right: you can't treat any surgery as minor. There is risk of infection anytime you put a break in the skin. But given the choice between this procedure on Monday and those others of you have faced, I'll take this on every time. There is no realistic risk I'll go blind; there is no really extensive rehab like a bypass patient faces--nor are they stopping my heart; and barring a big surprise no one sees coming, I'll hardly miss a beat in my training program. Of course lots of things can go wrong--and if they do, they do. The worst thing that could happen in my life already has. As Nasrudin once said: There are two ends of the world--the greater and the lesser. The lesser end of the world is when I die. The greater end of the world is when my wife dies. One of the conclusions I came to during my hiatus was that Nasrudin was right--and that I have indeed experienced the greater end of the world. I am in no hurry to experience the lesser end of the world--I have a great deal I'd like to accomplish between now and then. But whatever fear I had of death--and I've been so close to my own death so many times in my life that I didn't have much fear left to begin with--died with Jane. Strangely, realizing the truth of that has left me feeling more alive than I have since the day Jane was first told she probably had cancer. My life matters to me--and I will fight to keep it-- but not my death. Now I'll admit this probably sounds like whistling past the graveyard. The risk of death exists in any surgery and I'd be a fool not to acknowledge that. But I am more worked up about the inconvenience of it than I am about the risks. I'm annoyed that this is happening despite my regular brushing and flossing routines. I do appreciate your kind words and support. I just feel guilty about accepting them when others face far greater trials. Peace, Harry

Dear friends, There is physical age and there is mental age and their is chronological age. Chronologically I am much older than I feel--mentally or physically--most of the time. That isn't entirely true today, however. I'm looking at extensive--and expensive--oral surgery on Monday morning--and lots of antibiotics before, during, and after. A tooth I had capped less than two years ago has gone to hell on me and will have to be pulled so they can clean out the infection and save the tooth next to it. Then they'll rebuild the gum and transplant some bone as well. The good news is the periodontist says the rest of my mouth is perfect. I was not happy after I got the news of this, but I've decided it's OK--just one more thing to get through. This has been a hell of a winter for all of us: leaky roofs, frozen pipes, various ailments, hospital stays, operations--you name it. Relatively minor oral surgery just doesn't rise to the level of crisis so many of us are dealing with. We're up to four team members for September's Marathon Walk; I have personally raised over $3500 so far; our team has raised another $1500 on top of that; and our Relay for Life team is just short of $2500--all of which are substantially bigger numbers than we had at this time last year--and the direct mail campaign just went out this week--a month later than it did last year. There is a cottage industry out there on how to go about raising money for charity. The more of their stuff I read, the more I discover we've been doing that piece of it right all along. My instincts have been pretty good most of the time--though I am tweaking some things based on what I am reading. I feel quietly optimistic today: we're all going to be OK--we're all going to keep moving forward--we're all going to get through all these issues we are facing. We don't have our spouses, but we've got each other. It isn't the same, but it is what we need for this very now. At least that's what I think this afternoon. Peace, Harry

Dear friends, I seem to be having a quiet day, which is ok. I don't have much ambition to do much more than sit. I have two friends who are in the dog rescue "business," so I am hoping I don't go through what Kay describes. They are so into the entire rescue thing they went out and got a kennel license. My impression is they even do dog therapy with the truly wounded creatures they sometimes encounter. I got a look at some pictures of potential lab mixes last night from them--and some beagle mixes as well. Jane loved beagles and I loved labs. Our plan was to get one of each after we retired. Two, especially if they are puppies, would be more than I could handle. The only adult dogs available at the moment are high maintenance Australian and border collie mixes. My understanding is they need constant play and attention as they seem to stay puppies forever. I'm not up for the 15 year full-time trainer commitment those breeds require. I need something a bit quieter and more laid back than that. I had a lab as a teenager--and I like their temperament. But I worry about puppies in general. They can be a handful. We'll see what happens. I'm thinking another night with Jack Sparrow later. Peace, Harry

Dear friends, Kay, that place looks wonderful. I am happy for all concerned. Anne and Jan, writing is always good for the soul. Enjoy the course. My own news is more pedestrian. People came by today to help with the first mailing of the year for Walking with Jane. We did in two hours what it usually takes 2-4 days to get done by myself. I'm a trip to the PO shy of being done with that piece, though a friend is sending me a list of others to mail the package to. But 300 pieces is the by far the lion's share of what needs to be done. One of the people who was here does dog rescue work and may have a lead on a lab mix for me. I am supposed to get pictures of potential dogs later today or tomorrow. I'm not sure I am ready for housebreaking a puppy, but it will be what it is. It is a beautiful day here. Hard to believe we are looking at snow here tomorrow--and a high of 20 on Thursday. Peace, Harry

Dear friends, I got in a good outdoor walk yesterday, then went to the south regional state final my old school had reached--against all expectations. Unfortunately, they lost, though they played well. I saw a number of former students, which was good for me. Bleachers, however, are not good for my back, so I will have to go slow today to avoid tweaking it. Tuesday, people are coming in to help stuff envelopes for our first major mailing of the year. Peace, Harry

Dear Mary & Butch, Keep the good news coming. You are both very much in our minds, hearts, and thoughts. Peace, Harry

Be well. Be well. Be well. You are all in my heart and in my thoughts. Peace, Harry

Dear friends, Three very productive days in a row. Four days without a whiff of depression or anger. Five nights of increasingly untroubled sleep. I'm spending tonight with the Pirates of the Caribbean and the ridiculously flamboyant Jack Sparrow. All is quiet--but all is well. Peace, Harry

Dear friends, I promised I'd pass along some of the other things that came to me last week. The anger is much lighter today than it was two weeks ago when I began this piece of the journey. It began to lighten, honestly, the moment I admitted it was there and and began to focus on it and its causes. It is still there, but at a level I can live with for now. I will keep doing the exercises I learned so long ago. One important thing that came out of that piece of the struggle was how important keeping up those things is. One of the other things I realized last week and began working on immediately was the importance of forgiveness. The day before Jane went into the hospital we had a long talk about a number of things. She told me I had made her life better and that she had no regrets. She said there was nothing I had done that was wrong but knew I felt I had made mistakes in our life together and that I needed to know that she forgave me for the things I thought I had done wrong. She also told me she expected I would think I made mistakes that led to her death if she died--though she intended not to--and that she was forgiving me in advance for those things as well. I said the same things to her as well. We were saying good-bye, just in case things didn't work out as planned. It was a beautiful afternoon. But while we accepted each other's forgiveness, I have never entirely forgiven myself for what happened in the hospital. Part of me believes I should have let her go when she entered the first coma three days before Thanksgiving and that I compounded that error by not letting her go when she went into the second coma that Saturday. She was angry when she woke up the first time, joyous when she came back after the second. When the third came two weeks later, there was nothing left to try or to do but let her go. I know a lot of things would not have happened if I had let her go sooner. Our last struggle together changed many lives: it helped at least two marriages, created new knowledge about carcinoid and carcinoid heart failure that has saved many lives since, led directly to the creation of the Program for Neuroendocrine and Carcinoid Tumors at Dana-Farber--now one of the biggest programs in the country dedicated to that form of cancer--inspired her doctors to work more on the disease, provided the impetus for Walking with Jane... These are all good things. But I know what they cost both of us. I'm not sure the pain and humiliation those extra three weeks cost her were something I should have allowed to happen regardless of what good has come, and will come, out of it. On both occasions, she was ready to go. But for all I thought I was ready to let her go, I didn't. She may have forgiven me for doing what I did--the science mattered to her--mattered to both of us--but I have not been able to do so emotionally. I understand the necessity of it in terms of what others got from it--logically, I accept that. But there is more to life than logic and rational understanding. How do I explain all that to my heart, then? And yet, I know I would feel just as guilty if I had not given her every chance--not given her doctors every chance--not have given the researchers every chance. We all live our lives--whether we know it or not--in service to others. Jane and I were just more conscious of that fact than most. We went into her surgery with two contradictory desires: too limit her suffering and to learn as much as we could about her disease. It was a no-win scenario from the start once things started to unravel. Could I have drawn the line anywhere other than where I did? I don't know, but I don't think so--not and lived with myself afterward. So long as there was a fighting chance of her recovery, I had to give it to her. So long as there was something more they could learn, I had to give it to them. And we all agreed that when there was no longer a fighting chance, that was where the real line was. People talk about suffering for their art. Sometimes we have to suffer so that others can live and grow. Sometimes, when the prize is large enough, we have to die--or worse, watch someone we love die so that others can live. I keep coming back to Sidney Farber's early work on cancer. He knew that sometimes the drugs he gave those children might well hasten their deaths; he knew that even if he bought them a couple of extra weeks, there was going to be a price that had to be paid in pain and suffering by those children; but he also knew that if he did nothing, children would continue to die without hope. Jane's death created hope where there was very little--some would say none. What she went through--what I continue to go through--was the cost of creating those faint sparks that others will fan into a blazing fire that will devour carcinoid and NET cancer once and for all. I refuse to feel guilty about that sacrifice any longer. To do so would profane everything we went through together--and every humiliation she suffered. She did not die in vain, she did not live in vain--and neither will I. Peace, Harry p.s. to Mary: I tried to watch the video you posted above but am downloading a series of software upgrades and they have slowed everything on my computers to a crawl. It looks very interesting--I managed to get a look at the page, if not the video--and as soon as my connection frees up, I'll watch it.

Dear friends, I think the key here is to find the balance between the work I need to do on grief and the work I need to do in the world. I can't walk away from either one without doing damage to myself. That's another of the things I figured out last week. It's complicated in here. Pull this thread and this one way on the other side that doesn't even seem to be attached either loosens or tightens or does something else crazy. Nothing is ever simple--it all interconnects. Take that anger, as an example. Jane's death is part of it, but only after it runs through how sick my mother was after she gave birth to me on the other side of my brain--and the extreme other end of my life--then plays tag with several wars, the shooting death of a young boy in India, a guy who adopted a starving child in China during WWII, before returning to Jane's hospital bed and what the government did with its money instead of funding cancer research. Woof. I'm afraid I am not explaining any of this very well--but I'm working on it. Peace, Harry

Dear, dear friends, I did some work with therapists in my teens and early 20s to help me deal with the unexplained anger that I had dealt with for most of my life. My issues with anger long predate my relationship with Jane--or her death. They are rooted in things that happened immediately after my birth and were deepened over the course of my childhood by other things that happened to me. The earliest events, which I only learned about two years ago in a conversation with my father, explain a great deal to me in terms of what we now know about the mother-child bond. Fear, as Mary points out, is the source of most anger. Both emotions are irrational--or at least cause irrational behavior. I have a series of exercises one of my therapists gave me whose constant repetition over many years proved helpful in resolving some, but apparently not all, of those issues. My fear of abandonment and betrayal, which I had thought long dead, have returned with a vengeance in recent months. It has been a long time since I felt those things. Their return makes prefect sense, under the circumstances. I will return to the exercises I have used in the past, but first I needed to knock down those flames with the ruthlessness of a firefighter faced with a fire that seemed on the verge of getting out of control. There is still fire there, but there is no longer the immediate danger that it will engulf the whole neighborhood. I may, eventually, decide that going back to therapy is necessary. My experience with counselors and therapists is decidedly mixed. Part of that has to do with me: I don't trust easily--and I trust therapists less easily than I do most people. I know there are good ones out there, but it took me four tries to find one when I went down that road the first time. I met with two after Jane died and left each shaking my head. When the first suggestion one makes is a drug regimen almost before I have opened my mouth, we're pretty much done--especially after I explain my family history of drug and alcohol abuse and they still want to push pills. I'd rather feel the raw emotions, no matter how awful, and deal with them than be drugged into thinking I'm all better. Drugs are good at masking things that are sometimes--though not always--better dealt with up front. Yes, there are chemical imbalances in the brain that cause schizophrenia and bi-polar disorder, among others, that can only be addressed that way. But I don't think those things can be diagnosed by a "Good morning" and a handshake. Drugs should be a last resort in most cases--and certainly not a first one. Part of me wishes I could walk away from things for a good long while and deal with nothing other than my own healing. Unfortunately, for me, that would only make the healing more difficult. Every day I would know another 33 people had died of the same cancer that killed Jane--that another 33 would get that deadly diagnosis--and that God alone knows how many more were dying from it without even knowing what was killing them--and that I was doing less than all that I could to stop it. People I know would be dying--and too many of them would be dying alone--with no one even figuratively holding their hands. I saw that day-after-day when I was in the hospital with Jane, heard from doctors and nurses how rare what I was doing with Jane was, about how many people came into the ICU alone, stayed alone, and died alone. Grief compounded by that guilt would quickly become unbearable. My work on cancer is so intertwined with my own healing that leaving it--for all that it complicates my life sometimes--would make things worse for me than they are. And is there a point to healing merely to return to a world unchanged: where people still hate each other, where the seas still rise uncontrollably, and where the majority live in poverty and suffering while a handful live in wealth and pleasure? Certainly, I know I could do that work better if I were completely whole and healthy, but I look out the window and see an ecosystem and civilization at a moment of crisis in which even a crippled hand on the door may be the thing that makes a difference. Jane and i lived by a simple philosophy: that the needs of the many outweigh the needs of the few--or the one. My niece came down for part of the weekend. She pointed out to me that is a thing engrained in our family DNA--that it should probably be the family motto--and that sometimes fighting that DNA does more harm than good to our mental health. There was a lot more I unearthed last week--much of it less traumatic than that anger. I'll write about those things later. For now, though, finding a therapist or counselor I can work with is on the list. Now that the fire is under control, so is going back to the exercises that helped me deal with it before in the light of the new knowledge about where it started and how that links to Jane's death. And somewhere last night I discovered the clue to renewing the well of love--a thing I knew but buried under a ton of rubble after Jane died: love comes from love given freely and unconditionally; the more we try to conserve love and stockpile it, the less we have. It only increases when we give it away. It seems to me that at our best, we do a lot of that here. I need to remember to do more of that elsewhere as well. Now I have to go shovel the three inch "dusting" of snow we got last night off the steps and driveway and get to the grocery. Is the weather we've had this winter good for anyone's state of mind--other than a snowman's? Peace, Harry

Dear shannon, Good to "hear" your voice again. Do why they tell you and get home soon. You are in all our thoughts. Be well. Peace, Harry