Don was diagnosed with stage IV colon cancer (had spread to his liver and lymph system) on July 27th, 2007. He has been cancer free since March, 2008. We're leaving this blog update available on the website, as it has been helpful, informative and inspiring to many.
Teri and I were down at the UNM Cancer Center this past week, seeing my oncologist Dr. Lee and getting a new set of CT scans. We received some very good news - Dr. Lee pronounced me free of any signs of cancer! Needless to say, we were pretty excited to hear that. Truly, it was what I expected - in the sense that I did not think that anything bad was growing in me. I also would not have said that I was particularly apprehensive about the results of the scan, but the relief and excitement I felt when he said there was no sign of any cancer let me know that I was perhaps a little more keyed-up than I thought. At any rate, it was a very good thing to hear.
I'll need to go back every 3 months, with scans every 6 months. Dr. Lee said that the increased exposure to x-ray radiation means that they don't want to do a CT scan every time they see me. I do have a hernia in my abdomen where the muscle wall did not stay together after the initial surgical incision, but it is not something that should give me any trouble - I just need to keep an eye on it. It gives me a great excuse to not pick up my pedal steel, which feels a lot like it's made of lead instead of steel. But really, I feel great - not just good, but great. I think I have more energy than I've had in years. Life is good.
It's going to be a busy summer for Teri and I, as we are once again embarking on the adventure of buying a new house a few miles outside of Alamosa. We were in the midst of that process last year when I landed in the hospital for emergency surgery. We're planning on a little smoother ride this time. But it will be a lot of work, including building a new recording studio inside a large outbuilding already on the place we're buying. Our new place is about 7 miles north-west of Alamosa, in a beautiful location just north of the Rio Grande. We're excited.
I want to take this opportunity to thank all of you out there who have sent me your love, prayers and good energy, your cards, calls and emails, your friendship, brother-sisterhood, your support in the many ways I have received it. Thanks to all those who so generously contributed to my medical fund, to my musical family who so generously donated so much unbelievable entertainment for numerous benefit events, and to my family and friends that made those events work. The benefit events were so amazing - not only could I not take in all the entertainment that was present, I could not take in the incredible generosity, love, and human spirit that was present. People are so good! People are so amazing! I will spend the rest of my life doing my best to be worthy of all that I have received throughout this experience. I truly do not feel worthy, but I will do my best to live up to the spirit you have all shown me. Thank you, thank you, thank you!
So it's onward and upward, into what feels like a new phase of my life. I love what I do and have been doing, but it still feels like a new phase, although I don't even know precisely what that means. But I guess I'll find out, huh? If I already knew, I suppose I wouldn't have to live it. I've been booking some more gigs (see the calendar page), both solo and band, and I'm looking forward to that wonderful energy exchange that happens in musical performance, where we pass that life force back and forth. I've got lots of good work going on in the studio, and have been slowly moving forward on a new CD project of my own. It will have to wait until I'm in my new studio, although I'll be progressing on the other projects currently in process. Life is full, life is good.
My family is even going to try another family reunion this summer, which we were attempting to do last year on the weekend I landed in the hospital. Screwed that one up, didn't I? But we gotta get back on that horse, ain't that right? And I want my life to be full of such things, things that cancer has shown me are the truly important things. Passing the love around - that's why we're here. Thanks again to so many out there for passing so much my way - I'll keep it flowing back out as best I can.
I'll keep this page open, at least for awhile, and post some info on it occasionally. Maybe it will morph into general musings on life. It's an interesting process to write things down. Thanks for reading, my friends - all the best that life holds to each and every one of you, and I hope to see you soon! DR
Oh, I have been lax and lazy about keeping my reportage up to date, and some of you have actually been so kind as to give me grief for it! That is an exceedingly thoughtful thing to do.
So how am I? I hope I'm fine. I saw the oncologist and the radio frequency ablation doctor last month, and although they said there were still two spots on my liver (one they couldn't get to and one the RFA procedure missed) that were of concern, the spots hadn't changed in several months, and the docs were okay with just monitoring the spots and not doing any more treatment unless something shows up that seems like it needs attention. So we go back next month for some more scans, and hopefully all will be well and I will never have to do any of that stuff again.
But whether or no, as far as I'm concerned it is time to live life and get on with it, whatever it is. It has been an interesting time, to say the least, and truly, there are many lessons this experience has taught me that I am still working on incorporating into my life. And what are those lessons, just to remind myself?
First, to take time to do the things that make life worth living - the things that feed my soul. Things like going to the mountains and spending time in nature. Things like taking time to just sit and talk to a friend for an hour or so. Or like traveling with my wife, or hanging out and discussing future plans, dreams, and visions. Things like songwriting, and spending the quiet time that feeds such creative pursuits. I do truly love what I do for a living - making music and helping people make CDs and get their music out in to the world. It's a great thing, and it does also feed my soul. But it is all too easy to get so busy doing it that it runs away from me. I'm still working on that.
My body is slowly returning to something that seems like normal. My torso is a different shape after the surgeries and all, or maybe it's just getting to be my age. My body hair is returning, as is my scalp hair, although I've been continuing to shave it. I'm going to keep it bald for a while, just as a reminder to learn my lessons and do what I need to do. But at some point I feel like I'll let it grow back - I don't want to unduly hang on to the signs of the cancer, like the red badge of courage or something, or like some sign of "special-ness". I claim the same degree of special-ness for us all.
So many, many thanks to all who stop by this site to check on me. Know that your prayers and loving energy have done the trick, and I am well. I may keep posting here from time to time, but then again I may not - we'll see. Much love to one and all out there in this crazy world - be good to each other - we're all we've got!
Happy St. Patrick's Day to all you Irish folk out there, or happy almost vernal equinox to everyone who feels sorry for the poor abused snakes and druids. But who knows how it all went down, huh?
I'm recovering from my Radio Frequency Ablation (RFA) surgical procedure on March 12th, Wednesday of last week. The recovery has been quite a bit more intense than I was prepared for, and I have been experiencing quite a bit of pain. The surgeon (Dr. Delu of UNM hospital) poked several holes in my torso, going after the spots on my liver, or places where the spots were, in the instances where the spots have disappeared. In order to get to one of them, he had to go through my diaphragm, which for those of you who slept through high school biology, is the large muscle underneath your lungs that makes your breathing happen. I think one of the sources of the most pain has been the injury to the diaphragm, which has made it difficult to breathe. (Not to mention belch, sneeze, laugh, or yawn.) But it's all getting better day by day.
The surgery was mostly successful, although Dr. Delu could not reach one spot, so we'll have to wait and see what that means. We'll be going down to get new scans and all that good stuff April 9th, so we'll find out more then.
Meanwhile, I'm going to enjoy getting feeling better as quickly as possible, and the continued delightful experience of being chemo-free, which is a wonderful thing. I'll also continue exploring re-entering my life and what that means - always an adventure, and never a dull moment! I've continued to be very busy in the studio, and will be doing a few more gigs as we move into spring. Life is good, as it says on one of my favorite t-shirts.
All blessings to one and all out there - thanks for caring - be good to each other - life's too short to go any other way, however long you live.
Happy Valentine's Day! I just realized that as I was typing the date. It's been a long time since I've updated this page, as I have been waiting to know something about the planned upcoming surgical procedure. Teri and I just returned from Albuquerque last night after a new CT scan, appointments with the docs, and a chemo infusion, and we actually finally know something.
As I said in my last posting, we had expected to know dates and details after our last trip to Albuquerque on January 16th. However, we ended up with just more questions, as the doctors were unsure whether I should have full-blown slice-you-open surgery or a procedure called radio frequency ablation (RFA), which they can sometimes do through a probe from outside, and skip the slicing you open part. I like that idea. However the RFA guy was out of town so he couldn't participate in the discussion to weigh in on whether I was a good candidate for the procedure. He would be back the following week, so we would hopefully know then. That didn't work, so then it was the week after, then the week after that, and then it was this week and we went back.
Our oncologist Dr. Lee said I can have the RFA procedure instead of surgery, which is great news. Initially, he said I didn't even need to do chemo again as we would schedule the procedure within a couple weeks, but then when we actually went to schedule the appointment, we couldn't do it until March 12th, and as that is another month away, I ended up doing the chemo infusion. It even got a little more complicated, as the infusion nurse looked at the IV port in my chest, which was starting to protrude its purple plastic through my skin, and decided they couldn't use it and it needed to come out. So they squeezed me in with the Interventional Radiology people who do the port installations and removals, and went ahead and took it out. Then I went back to the infusion suite and got the chemo through an IV in my hand. We finally made it out of the hospital a little before 5:00. It all ended up being a long and complicated day, but with very good results. I no longer have this thing installed in my chest, and I may possibly have had my last chemo infusion! At least I've had the last one until mid-April, when we are going down to get another CT scan and see Dr. Lee, which will be a month or so after the RFA procedure on March 12th. Then we'll see what we can see.
The RFA procedure will be going after about 3 spots on my liver and basically burn them out, hopefully destroying any remaining cancer cells lurking around. It is done sort of like outpatient surgery, although they are going to admit me for at least one night to monitor pain during recovery. I will be under anesthesia for the procedure, and that's okay with me. The way I figure it, as we mature, we need to pick and choose our memories, and I can certainly let this one go.
So once again it's 4:00 am, and the first night of the chemo I basically can't sleep. But I'm feeling good - I have had my last chemo at least for awhile, and I can start to work on my body a bit more to get back my energy and strength. People say I look good (bless them), but I am weak, don't have a lot of stamina, and don't like the shape I'm in in general. It will be good to get some more exercise and get some of these toxins out of my body. And someday, it might even warm up here in Alamosa! That will make it easier. Actually, I think yesterday while we were in Albuquerque, it got above freezing here - what a concept. Although snow is predicted tonight and tomorrow, so it ain't over yet. But the rivers will be full this spring, the aquifers may catch up a little, the plant kingdom will be happy, and life in general in this high desert will rejoice at the life-giving moisture. So I won't whine too much.
Thanks as always to anyone who stops by here to check up on things and to see how we're doing. There's light at the end of the tunnel, I think. I still don't know exactly what the landscape on the other side will look like, but we'll figure it out as we go, I imagine. I think it will be similar in many ways, but it also needs to be different too. There's that old saying - if you keep doing what you've been doing, you'll keep getting what you've been getting. I like a lot of what I've gotten in this life - I love it in many if not most ways. But the cancer is a symptom of some things I need to not get any more of, and so things need to be different, too. I look at it as a creative adventure - to figure out what those things are that need to be different, and to implement them in our lives.
I believe we as humans are in a similar phase in our evolution as a species and as our cultures within that species - we know some things need to change, but we can't quite figure out what all they are and how to go about changing them, or if we think we know, we certainly can't agree. We need to get there or at least start making some significant headway, because there's another thing I already knew but cancer has reinforced - life can (and will) always find a bigger hammer, if you don't pay attention when it whacks you on the head. Read the signs, like the song says.
So here's to a spring of hope, rebirth, new cycles, moving forward, full rivers, abundant life, and all that is good to one and all. Be well, brothers and sisters - thanks for caring, about Teri and me, and about each other! Be good! Spread love!
It's yet another long cold winter night (just 14 below though - not too bad), a little after 4 am, and various side effects are keeping me awake. It's been a little over a week since my last infusion (Friday 1/4/08) and I had a good week last week with not a lot of side effects. I stayed busy working hard in the studio and had good energy. But irinotecan (one of my chemo drugs) has a peculiar characteristic of having some of it's strongest side effects a week or so after the infusion, and that's what's happening now. Still, it's not too bad - just some bad gas and heartburn and a little background nausea - just enough to make it difficult to sleep. Nothing like the torrential diarrhea they warn you about - although I think I may be a one-man violation of the Kyoto protocol regarding greenhouse gas production.
I had an interesting ride of side effects after the 12/22 infusion, which was my first with the drug Erbitux. One of the side effects they warn about is "skin rash" on the face, back, and chest, which to me means that some skin might get somewhat red and itchy or something. What they really mean is that you are going to erupt in bloody pustules, which is what happened to me, centered on my face. It was lovely. (I'll spare you a picture.) At this date I've still got red bumps and stuff on my face, but it's gone away substantially, thankfully. It was pretty gross and quite disturbing, and I could feel depression creeping in to my attitude. Teri and I talked about it quite a bit and after talking to the medical people at UNM, we decided to not include Erbitux in the 1/4/08 infusion, as my side effects were in full bloom still, and I could not relate to them getting twice as bad as they were. I think it was a good decision. I'm open to taking it again if need be, but we'll see how it goes.
Teri and I are going down to Albuquerque on Wednesday the 16th to see the oncologist (Dr. Lee) and the surgeon (Dr. Heywood) again and schedule the upcoming surgery. I may or may not have another infusion before surgery, depending on how soon they schedule it. I also get to skip having another CT scan, which will make the whole thing much more pleasant. Those barium milkshakes they make you drink before the scan need some seasoning or something - they'd never make it at Dairy Queen.
So anyway, it's onward and upward toward the clean-up surgery, healing-up time after that, probably some more chemo, and then on to life and all that it holds, as far as I'm concerned. I hope to do some more gigs soon, but things have been so up in the air it's been hard to schedule anything. I did play solo on New Years Eve at the SLV Brewing Company here in Alamosa, and it was a wonderful night of friends, fellowship, good music (I hope), good food and drink, and a general great time, at least for me and as far as I could tell, for folks in general. I loved it.
Blessings to all out in web-land - we are all connected in more ways than this. Thanks for your caring enough to read this - love and best to you and yours, and hope to see you soon!
It's the first day of winter and the longest night of the year and it's well below zero on a mostly full moon night in Alamosa, Colorado. It's a little before 1:00 am and I can't sleep. I had my fifth chemo infusion today at the hospital here. I was originally scheduled to have it last Wednesday in Albuquerque, but it was a crazy day at the UNM Cancer Center, andby the time the good doctors got around to seeing me, which was about 2 1/2 hours behind schedule, it was too late to get the infusion treatment in, so we scheduled it at home here, shooting for Friday, but the new infusion drug didn't get here until late afternoon, so Helen Lester the oncology nurse here was ever so kind to come to work on a Saturday so I wouldn't have to get my infusion on Christmas Eve. The spirit of Florence Nightingale is alive and well in nurses everywhere - I can swear to that from my own experience.
It was a very eventful visit with the doctors at UNM. We saw the oncologist Dr. Lee as usual, but also saw the cancer surgeon Dr. Heywood. Dr. Lee has talked from the beginning about another surgery to clean up the spots on my liver and anything else that needs doing, and it seems that he is ready to move forward on this sooner rather than later. We'll be going back down there for appointments on January 16th and the doctors will schedule the surgery then, probably to be about two or three weeks after that date, which would likely mean early February. Another change was that in order to prepare for the surgery, I needed to change the other original infusion drug Avastin to another cancer drug called Erbitux. Avastin will get in the way of healing up after surgery, as it prevents new blood vessels from forming. (This blocks tumors from growing larger, as they can't grow beyond a very small size without developing their own blood vessels to supply them.) Erbitux blocks tumor growth in another way which won't interfere with healing after surgery. This change also puts me on a two-week chemo schedule, which plays havoc with my schedule of studio work, but if there's one thing cancer is teaching me, it's flexibility and non-attachment. Things will work out as they will, and thankfully my recording clients know what's going on and are all very understanding and supportive.
Another interesting change is that about ten days ago, my hair starting coming out by the handful. It was already quite thin from more gradual hair loss, but suddenly I was like a shedding cat in spring, leaving piles of it on my pillow and anywhere else I rubbed up against something. I expected this, as it is a listed side effect of irinotecan, but it was still quite a trip when it really started happening. I finally decided to just whack off what was left, as it was getting pretty patchy and was a general pain. Teri and I were standing in line at Wal-Mart (unavoidable sometimes) and I could see the beauty shop gals standing around in their shop by the door, so I went in and had them buzz it, then we went home and Teri shaved it, as I really didn't want a bunch of little bitty short hairs falling out all over the place either. It looks the same from my side, but looking in the mirror is still a bit of a shock. It's also amazing how much heat that little amount of hair held in - I'm very aware of it being cold quite a bit. But it sure is easy to wash - just think of all that money I'll save on shampoo.
Here's a photo I took with my palm pilot/phone, just so you'll be prepared -
My enterprising big brother Ed obviously had too much time on his hands and went to the Hair Club for Men website (truly!) and decided to try out a few hairpieces for me. Like he said - bald is not so bad!
So anyway, I'm going to try to get some sleep. Happy Solstice! Merry Christmas! Happy Hanukkah! Clamorous Kwanzaa! To me, this is the season when my intention is to take time to remember, sense, and experience that there is still something transcendent in this life and in this world - call it what you will, and find it however you can. And it is not transcendent in the sense that it is far away and much removed - it is in the tiny details right in front of us. "Split a piece of wood and I am there - lift a stone and you will find me," as it says in the Gospel of Thomas. It is the season of the sun's rebirth - may that be reflected in all of our lives and all of our hearts, this season and for all others. And so it is. Thanks to all who read this for caring enough to do so. All blessings and good things to one and all!
I've now experienced one infusion treatment with the drug irinotecan substituted for oxaliplatin, and I'm happy to report that so far, the side effects are much easier to deal with. The incredibly creepy nerve effects of oxaliplatin are absent completely, which is a great relief. It often felt to me (after the oxaliplatin infusion) that I was being possessed by some alien entity crawling around in my nervous system, doing weird stuff right and left. There is no numbness/electric shock feeling in my hands and my voice seems to still be pretty normal. The irinotecan is not a free ride, however - I've been feeling more fatigued than before, but so far I've been spared the most-mentioned side effect, which is monumental diarrhea (knock on wood). We'll see how it goes.
We got to stay home for this infusion, receiving it here in Alamosa at the San Luis Valley Regional Medical Center, which is a fine facility with a first-rate infusion center - a very comfortable and homey place to receive treatment. Thanks to the fine folks there for making it as pleasant as possible.
I've been busy working in the studio pretty steadily, moving forward on several clients' projects that were in process before I was hospitalized back at the end of July. I will also soon be starting on recording for a new solo CD. I've done demo recordings of several of the songs under consideration, and really feel like it's time to move forward to do the real thing. I do feel some trepidation, however, as I am certainly my own worst client - indecisive, changes his mind, does 40 takes to get a fiddle track he likes, is depressed about the project one day and ecstatic another, and on and on. But so it is!
All best to all who read these words - thanks for caring and for your support - have a great Christmas/New Years/Holiday Season! All blessings to all - Don
We all had a great time at the November 4th benefit in Taos - it was an unbelievable day of music, auctions, food and drink, dancing, and enough positive energy to light up a medium-sized city. My deepest gratitude goes out to all my friends who put an incredible amount of time and energy into putting it all together. It was truly wonderful to hear so many of my musician friends doing inspired and creative versions of songs that I have written. It was all recorded and I can't wait to hear it again.
After the benefit event Teri and I stayed down in NM, spending a night at beautiful and relaxing Ojo Caliente then going on to Albuquerque for medical stuff. I had blood work done on Tuesday then started Wednesday off with a CT scan (they give you these lovely barium milkshakes to drink - yum!), then following up with an appointment with Dr. Lee, my oncologist, then following that with chemotherapy infusion.
Dr. Lee gave us some great news after he had read the scan results. One of the primary purposes of the regular scans is to track four small spots on my liver where they feel that the cancer has spread. Of those four spots, three had disappeared completely and the fourth had shrunk considerably, so something is working! Lets see, it could be the chemo, the positive energy, love, and prayers of so many dear people, the dietary changes (heading toward vegan and raw - interesting stuff!), the various kinds of energy work, acupuncture, herbs and supplements of various kinds, or maybe just all that sleep I'm getting not running all over the region staying up all night driving home after the gigs - who knows? But something's working - so we'll just keep doing it all!
The chemo laid me pretty low for a few days as before, and the side effects were a little more pronounced, particularly the neuropathy (nerve damage) effects of the oxaliplatin. These seem particularly ill-suited to someone who sings and plays stringed instruments, as two of the most affected parts of my body are my fingers and my throat and voice. We had discussed this with Dr. Lee before I started chemotherapy, and he said then that there were other options, and we could switch if the nerve damage became too much of a problem, as it can become permanent. So we talked about it again and decided to swap the oxaliplatin for irinotecan, which still has some strong side effects, but not the nerve damage. So we're going to try that next time around.
Thanks again to all for your interest, your incredible support, prayers and good energy. I can't tell you how much it all means to me and Teri and my whole family. All blessings to one and all, and I hope to see you soon!
I have now finished the second round of chemo and am again on my week off. It was great to be able to get the infusion treatment here in Alamosa - the San Luis Valley Regional Medical Center has a very nice infusion center run by Helen Lester, an oncology nurse-practitioner, and all the folks there were wonderful. This round has been a little worse as far as the side effects go - the cold sensitivity and cramping in my hands, some strange pains the first night after the infusion, constricted throat (and voice), and some other strange stuff. I don't think there's any danger of Oxaliplatin escaping the confines of the hospital and becoming a popular recreational street drug or anything. Still, it hasn't been too bad overall, and the side effects from the infusion drugs decrease day by day after the time of infusion. I've been working in the studio with recording clients and basically being pretty functional overall, with the exception of a couple days right after the infusion where I lay pretty low. Also I'm not tearing around all over the country side at all hours playing music a few nights a week, which I do miss - but I know it's not time for that right now.
I do plan on continuing to play a few gigs here and there, both solo and with the Rifters, and I'll try to get the word out about them. Speaking of which, there's a big party happening in Taos on November 4th - a benefit arranged by my brothers and sisters in the musical community of Northern New Mexico, happening at the Sagebrush Inn Convention Center, on the south end of town. It starts about 2 pm and will go until at least 10 or so. There'll be a bunch of folks sharing their music and talent with us all - it should be an amazing day. There are more details here. My heart, my thanks and my gratitude go out to all those putting together the benefit and to all who send their prayers and good vibes (and care enough to check this website!) - I appreciate it all so much. All best to one and all and I hope to see you soon.
I've finished the first round of chemo and have a week off. I'm feeling great and enjoying the beautiful fall in the San Luis Valley. I even got away for a short day hike in the ever-amazing Sangre de Cristo mountains - just a few hours going up Wild Cherry Creek north of Crestone until it was time to turn around. It was gorgeous of course, although it took about four days afterwards before I could go up or down stairs without wincing. It's good for me I'm sure.
I have another chemo infusion this Friday to start another cycle. I get to do this one here in Alamosa, so we don't have to pack it all up to go to Albuquerque, which will make it all quite a bit easier, I think, and will be a lot less disruptive to life in general and those little details like Teri's work schedule - although my thanks go out to the folks at the college for being so understanding and supportive of both of us - I couldn't ask for more, for sure.
Teri also has a message to send out to you fine folks out there - thanks again so much for your prayers and energy and all else - be well and hope to see you soon!
A friend recently reminded me of a thing I know but sometimes forget… we are all healers. Whether sending love through intercessional prayer, healing meditations, asking our Angels or the Elements, through dancing to the music, or raising a glass in toast, the positive energy does make a difference. Don and I both feel it and appreciate it more than we can ever say.
The September 22 event was amazing. The energy created by the hundreds of people there, all so willing to help and so generous with their time, money, gifts, hugs, and love, produced the most remarkable day I can remember. We’re very grateful, too, for all the work our friends and family have done to create these beautiful benefits here in Alamosa, in Salida/Poncha, and in Taos. I’d name names but they would most likely just be embarrassed and the list would be long.
Don has made it through the first two weeks of chemotherapy and now gets a week off from medications. He’s done so well through this first round! He’s also doing some energy work and nutritional supplements. We’ve changed to a plant-based diet and have slowed down considerably. The lifestyle changes have been good for us but I know Don’s getting antsy to play soon too. We are grateful for the incredible amounts of information folks are sending and sort through it to decide what feels right for Don. We both believe we’re doing the right treatments for the time being and have faith in the power of love to heal.
Don once wrote a song entitled Accept It as a Gift. I’ve been sitting with that idea a lot lately. It’s challenging to be the center of attention and to accept all the gifts coming our way without any twinge of guilt or embarrassment. There are so many worthy causes, and so many who are in greater need. But as another friend reminded me, our gift to all of you is to accept with love and gratitude all the wonderful offerings given us and then spread it around.
My heart is filled with the love you send. It helps me navigate this unknown territory and it helps Don heal. I’ve accepted that I’ll never be able to repay you all and have come to understand that’s not what it’s all about. Instead, I’ll keep my heart open and do my very best to take this generosity and love into all of my encounters.
The September 22nd benefit here in Alamosa was a total mind-blowing success - such an incredible day. I made it through a lot of it but had to bail at about 7:30 - I was pretty done in by then. There were three stages full of music going on, and the only bad thing for me was all the great music I missed and the people I'd have loved to play with but didn't get the chance to. Still, it was great. There were also some benefit events in Poncha Springs and Salida, and I sure want to thank all my dear friends who put these events on - your generosity and kindness blow me away.
We have been to Albuquerque a couple times in the last two weeks to receive more tests and to get going on the chemotherapy treatments. We'll still be working with MD Anderson in an advisory capacity but will be getting the actual treatment either from the University of New Mexico Cancer Center or under their orders at the hospital here in Alamosa.
The new finer-resolution CT scans taken at UNM show about four spots on the liver that the oncologist (Dr. Lee) is concerned about, as well as a couple of lymph nodes that look suspicious. Of course, there is no way short of biopsy to know whether these areas are cancerous, but they will be watched and monitored as chemotherapy progresses.
I received my first chemo treatment (at the UNM Cancer Center in Albuquerque) on Friday, September 28th, after having the IV port installed in my chest the previous day. My regimen is basically to receive 2 drugs via intravenous infusion once every three weeks and to take a third drug via oral pills twice a day for two weeks. The cycle repeats every three weeks. The two IV drugs are Oxaliplatin and Avastin and the oral drug is Capecetibine. Oxaliplatin is a platinum-based drug and has some very strange nerve-based side affects, which I have been experiencing for the last few days, most noticeably an intolerance to cold. If I touch anything the least bit cold, my fingers start to go numb, with a strange tingly feeling, and there are other strange nerve things as well. It feels a little like having some kind of alien presence living inside - pretty interesting. I'm thinking I will be quite well-bundled up as I go through the upcoming winter in the good old San Luis Valley, which of course happens to be one of the coldest places in the country. The oral drug does give me a vague but constant feeling of mild nausea or queasiness, but not really too bad.
So far the side affects have been quite a bit less than I was prepared for (knock on wood), for which I'm very grateful, and all in all, I'm doing fine. I'm still able to do some studio work and should be able to do a limited number of live gigs. The chemo treatments will run through March of 2008, after which I'll have to have one more surgery to clean up any remaining trouble spots. Then hopefully it will be time to move on to whatever comes next.
Thanks again to one and all for all the care and support - I am so very grateful. All best to all - Don
We just get back from another week in Houston meeting with both the cardiologist and the oncologist. The cardiologist said my heart is fine, although I'll need to stay on the medications to guard against side affects of atrial fibrillation for awhile yet. The oncologist wanted to do a fresh set of scans and x-rays to check and see if there were any signs of cancer anywhere else in the abdominal cavity or on any other organs. We should know the results of those this week. Until that is done, they won't be ready to recommend the treatment protocol, so we're still waiting on that.
We also met with the director of the cancer center in Albuquerque on the way home - conveniently enough she's the next-door neighbor of Teri's brother in Albuquerque where we spent the night - don't you love it when things work out like that? So it looks like I'll be receiving some initial treatments there and then be able to get most of the rest done in Alamosa, only going down to Houston every couple months for check-ups and tests. There's still a lot of figuring out to do, but we're getting there. Thanks again to all for the support, prayers, and good energy - it is so much appreciated.
From Don - I'm feeling better every day. Almost all of the water weight has been shed - still a little on my feet. The skin on my legs and body feels strange as it adjusts back to my somewhat normal size. Sleeping and eating are still fairly adventurous and not exactly normal, but getting there. I'm still very weak overall, but stronger all the time. I'm continually overwhelmed by the kindness, thoughtfulness and generosity of the members of my community, both near and far. I'm sure that the prayer and energetic support I have been so fortunate to receive is a large part of why I'm feeling as good as I am and recovering quickly. As for the future, Teri and I will be going back down to Houston the second week in September to plan the treatment regimen for dealing with the cancer.
From Don - We got home from Houston in the evening after flying into Albuquerque. How glorious it was to see the beautiful San Luis Valley again, and breathe the high, clear, thin, sweet air again. Unfortunately, that night I woke up with a pounding and irregular heart beat, and felt like I'd better go back to the emergency room. Had to spend a couple more days in the hospital getting that settled down and under control and finally got home again on Monday afternoon.
Note from Carol: Hooray! Don and Teri will be home in a couple of days. I know how much everybody will want to come and visit, but Teri and Don request a few days to get settled. Don is getting stronger every day, but still recuperating and will need lots of rest. So please give a call or email before visiting. Thanks to each of you who has been there through this trying time. Keep the love and light flowing:) Thanks!
Note from Carol: Since Don is no longer in the hospital, the previous email and snail mail addresses are no longer in effect. You can send card or notes to Don at P.O. Box 825 Alamosa, CO 81101. Teri and Don should be home within a week so that he can finish recovering from the surgery at home. As always, thank you on their behalf for all the support. It has helped them so much!
Hi everyone - here's an update straight from Don himself!
Subject - twists and turns along the high roads -
Hello my dear friends out in musical email land,
Many of you good folk have heard about this round of adventures that I have been experiencing in the last couple of weeks, and I have been repeatedly moved to tears by the unbelievable oceans of support, love, light, healing, and blessings that have been being sent my way, via the website/hospital email link and other emails and phone messages. I don't think I can begin to express my gratitude and wonder at just how amazing it is. Thank you, thank you, thank you, my dear friends, family, neighbors, brothers and sisters – I do not feel worthy.
This started out as just a brief note that I was going to ask my office manager and sister-in-law Carol to send out to our group email list for those who might not have heard elsewhere, but I have been moving so slow with difficulty typing or even focusing that it has turned into a sort of reportage (they call it a blog these days don't they) or diary of this journey as it has continued to unfold. So thanks again to all who have offered such unbelievably generous support, and in case you want to read a bit more about it all -
Basically on Friday July 27th, I discovered that for the previous couple months I had been experiencing the beginning symptoms of colon cancer, discovering this by way of emergency surgery that I'm sure saved my life. I had been working in the studio with my friend Marty Martinez on some of his beautiful music but was having more and more abdominal pain as the day went on. This was probably the fourth recurrence of this biting pain that I'd experienced in the previous couple months, and while talking with my wife Teri we thought we should get it checked out. So I excused my self from my session with Marty to take an early lunch break and went to Dr. Soward's family practice here in Alamosa and saw his PA partner Kirk Kritner, who then consulted with Dr. Sowards and suggested we should bring in the SLV Regional Medical Center surgeon Dr. Steve Odom to the conversation. All the docs felt that I could be suffering from (1) symptoms of a previously ruptured appendix that had walled itself off then repeatedly burst during the periods in which I had been sick, or (2) something else unknown and probably worse. The next step was to check into the hospital for a CT scan, which they managed to schedule me for later that afternoon. Don't look good for getting any more music down today - sorry, Marty!
So it's into the giant plastic buzzing donut to see what it could see. The results were somewhat inconclusive - there was definitely a mass of something there and it was in the general area of the appendix, but probably not just that. Basically, the only way to know was to open it up and look. "Wide Open" indeed. So Dr. Odom assembled his surgical team – I was hoping not too many of them had big plans for Friday night.
Speaking of big plans for Friday night, This whole bizarre chain of events fit into my/our life in oddly synchronistic ways, which could be looked upon as amazingly bad or amazingly good. One of them was that I was supposed to be having a mini-family reunion in Red River, NM while playing at the Mother Lode with the Rifters on the 27th and 28th. Not exactly a good thing for having a rollicklingly good time at a family reunion or a great gig with the band, but it did mean that I had some loved one's gathered from far and near and it was/is sure great to have their support close by.
So anyway – back to the surgery. My memories are a little vague – wonder why that is? Oh yeah, I wasn't there. They found more than they had hoped to find – basically some tumors and inflamed and infected tissue, which they removed as much as possible. Everything in basic surgery went well, but some complications arose after – namely that my dear tired kidney buddies decided they had had enough of this and shut down. This of course is not a good thing and has a bunch of crazy effects such as drastic retention of fluids, but the docs got things more or less under control and I settled in at the SLV Medical Center.
I was extremely out of it during this period. I know a lot of folks came by to see me, and I remember them as faces floating through a dream. The nights were particularly bizarre. Each seemed like it was weeks long, with one morphine-assisted fever dream moving into another into brief waking into dreams and journeying, on and on and on. Although my consciousness was not very perceptible on the physical levels, I'm convinced I was indeed journeying, deconstructing and reconstructing, disconnecting and reconnecting, investigating what is real and what is not. I'll let you know when I get it all figured out, ha, ha.
While I was flying through the nether regions beyond somewhere my dear family members were trying to figure out how best and where best to treat me. Although the great folks at SLVRMC were taking stellar care of me and doing pretty much what could be done, my family decided to move me down to the MD Anderson Cancer Center of the University of Texas in Houston, TX, widely recognized as one of the best places in the world for dealing with everything connected with all of this stuff. My big sister Mary Ann is very connected in the massive University of Texas system (she's the Dean of the Life Sciences Division at UT) and my wife's big sister Linda works for the SLVRMC in Alamosa, and man, if you want get some things done and make stuff happen, turn some big-sister energy loose – no obstacles stand a chance.
So sort of the next thing I remember (this was Friday Aug 3), they were wheeling me out of the Alamosa hospital on a flashy yellow gurney in the company of a couple of medi-vac guys that could have dropped out of some adventure/spy/space/military novel, Hawkeye and Bill. We took a short but bumpy ride in an ambulance to the Alamosa airport, where a skinny little jet plane was waiting on the runway. They wedged the gurney and all of my connecting tubes fluids, drugs, oxygen and concoctions up against one side of the 5' diameter tube, Hawkeye, Bill, and Teri squeezed in, and in a couple minutes the San Luis Valley was receding into the sunset and we were on our way to Houston.
After about a three hour flight we landed in Houston and then took a much longer ambulance ride (I guess Houston is bigger than Alamosa) to the hospital and was soon getting settled in the ICU at MD Anderson.
Things have been up and down, but generally since then I've been improving rapidly every day, out of the ICU after a few days, finally yesterday done with IV nutrition (8 days with no eating or drinking – not the best way to live, I promise) and free of those tubes, and today tubeless, tubeless at last! However I'm still carrying 40 or 50 pounds of excess fluid, which is coming off fast but has a ways to go.
What everything has been focused on in these last couple weeks or so is to recover from the trauma of the initial surgery and subsequent kidney failure. Once that is done we'll start to figure out how to approach the cancer/oncology stuff. I'm not that worried about that, really – I think I'll be fine. I don't think I'm going anywhere for awhile.
But an experience like this – cancer or some other major reboot-reconstruction – I believe offers lessons and potential gifts, if we're open enough to see them, and I'm going to do my very best to learn whatever lessons are mine to learn here. I mean life can always find a bigger hammer, and this one was pretty good-sized. So I guess that will be my job for a little while – figuring out the lessons, and figuring out what a life that incorporates them looks like.
But there a few that I know from just the last two weeks that I'd love to share. Here's a good one – if those who love you think you should go ahead and go to the doctor and get some nagging thing checked out, well, maybe you should! What a concept. It might save your life.
Here's a bigger one – the ever-extending web and network of human connection, love and caring between family, loved ones, and friends builds a structure of beauty and power that extends up and around and out from us, to infinity, like this cathedral built of some super-fine gossamer fern-like glassy light-filled substance, springing forth further at every touch and human connection, whose wonder and glory dwarf all the little dust-balls of trials and tribulations that might collect in the corners here and there. (Forget your small concerns!) That's truly one of the things I saw in my fever-dreams that seemed so clear, so true, and so obvious. The support, love and energy that have poured out to me throughout this episode (not to mention in so many other times and circumstances) truly are what is real in this life. I don't think that's exactly news to me, or any of you. But there are levels upon levels of real and unreal, and I want to head further in that direction.
I'm actually getting released from the hospital tomorrow (Friday August 10), although Teri and I need to stay close to the hospital for another week and be checked out in the outpatient clinic before we can head back to our beloved homeland. And hopefully it won't be too much longer before I have the privilege of sending music out your way, playing catch with the energy, while you throw it back. I mean, it's such fun, you know! I've got a long ways to go, but I'll keep you posted.
I'm also not really going to be able to keep up with email and phone much at all for awhile. Speaking of, thanks to my dear friends and family members that have been updating the www.donrichmond.com website and putting up the links with the hospital contact info email system – it's been working so well that I think the candy-stripers delivering the messages are beginning to wonder who the weird looking old dude in room 511 is. I probably can't answer all the great messages I've received, but please know that they are all read, laughed and cried over, and deeply appreciated. We may set up some other system when I get back home – we'll keep you posted on that as well.
Meanwhile, be good to one another, dance and sing all you can, and I'll see you before too long! Words cannot express the gratitude I feel, my friends – thank you, thank you, thank you!
PS a couple more fever dream revalations creeping by in the middle of the night – if treatment makes me lose any more of my hair, I always wanted to be more like Chuck Pyle, and while pushing my IV tower around the floor with two hospital gowns tied around my neck – like Guy Clark wrote – always trust your cape!
PSS – I echo Don's thankfulness and gratitude. I can't begin to tell you the difference the love, light, prayer, healing thoughts, positive vibes made for us. We truly felt it all. I especially felt it when I thought Don was leaving us last week because of the kidney and heart problems. I'll never be able to repay my siblings and their families, Don's siblings and their families, and our incredible friends for the support they've given us but I will never forget it. Your messages have lifted Don's spirits and helped heal him. Like Don said, thank you, thank you, thank you! While the crisis of post-op complications is over, we have a long and unknown journey ahead of us. I feel certain we'll manage this too being held up with the love and support of you all. With love, Teri
Hi - good news! Don has been moved out of ICU today. He and Teri are in good spirits and would be happy to hear from people. Please do not use his normal email address because it is overloaded.The hospital provides a service to send emails to the patients. Go to www.mdanderson.org/contact_us, Look under patient, friends and family, click on message to a patient and go from there! If you prefer to send a card or letter the address is:
Don Richmond, MRN 722694 P511 University of Texas MD Anderson Cancer Center P.O. Box 300206 Houston, TX 77230
Thanks to all, Carol
Don has really turned a corner in the last day or so. He walked a few steps today, has been losing some of the 71 pounds of fluid he gained, and most important, had a bowel movement!!! He is in good spirits, looking at his email, and looking forward to eating after 9 days of fasting. His sense of humor is intact. I know a large part of this is due to the incredible amounts of love and light we are receiving; believe me, we can feel it. I also know hat this place is the right place to be. The care has been excellent.Don should be moved from ICU tomorrow to "the floor" so I will post a mailing address. I know he would love to hear from you. His email box is full but he is looking at it today and may be able to read and/or respond to some of those messages. It is wonderful to have him back among the conscious.A note to the SLV residents... The doctors here were very impressed with the work the surgeon, the internist, and the nurses did at SLV Regional Medical Center. I find that reassuring. As for the cancer and the treatment, we have not yet had a consultation with the oncologists. It may happen today, but more likely after Don's been moved out of ICU. I will keep you posted. Thanks to all of you for the tremendous love and support. And thanks Carol (my sister) for posting the updates. In gratitude, Teri PS from Carol: Many people have been asking about a place to contribute to a fund for Don. I have set up an account for them at SLV Federal Bank. If you wish, you can mail a check to Don Richmond P.O. Box 825, Alamosa, CO 81101.Thank all of you for your support.
Don and Teri flew on the local air ambulance to Houston last night. Don is in the ICU at MD Anderson, which is a premier cancer treatment hospital. He has a large amount of fluid retention, and the Doctor thinks it may take another week to control that. At that time, he'll find out when treatment can begin. They both are very grateful for all the love and support coming their way. All any of us can do at this point is hope, pray and send good thoughts.
I believe there will be a benefit for Don on Sept. 22 at the Elks Lodge in Alamosa, CO, and another one in Taos, NM on Sept. 2nd. More information on those will be released soon. Thank you for all the concern, Carol (Teri's sister)
First, thank you all so much for the thoughts, prayers, light, love, flowers, cards, calls, and good wishes. This hard time is made much easier by the incredible and amazing love and support of friends and family.
Don’s had a rough go. What we thought was an appendicitis attack last Friday night (July 27) turned out to be colon cancer. He is in Intensive Care at the San Luis Valley Regional Medical Center in Alamosa and as soon as he is recovered enough from the surgery, we will be heading to M.D. Anderson in Houston, Texas for treatment.
Although I know he’d love to see you all, this isn’t a good time for visitors. He is doing much better, but still very uncomfortable and somewhat incoherent with all the drugs. He needs to rest and recover so we can get to Houston as soon as possible.
I will try to update the website every day or two to keep you all posted. Thank you again for your love and caring. I have every faith it will make a huge difference.
Teri and Don