Tony Conley's health fund
I’ve been sick for some time, and it’s time to talk about what is going on with my health, and how it is affecting me and my family.
I have a fairly large tumor in my abdomen, and it has progressed to the point where I must now give all of my attention to my health and healing. I have been largely bedridden since mid-May, and maintaining any sort of appearance of normalcy has become impossible.
It’s hard to say exactly where and when it began, but it’s been probably about a year since I first noticed that everything was not quite right. It all began as a series of small things that I attributed to the stress and strain of daily life, but in May it became apparent that what I was dealing with was in no way normal.
I woke up on May 21 thinking I had the flu, I was achey, sweaty and feverish. As the day progressed I became very ill, and by days end I had lost several pints of blood. I remained extremely ill, and was totally incapacitated for almost seven weeks. Caring for myself was an impossibility, and I lost 35 pounds in a few short weeks. When I finally found the strength to place myself in front of a mirror, I was shocked to see the drastic changes that had occurred. I had already lost 30 pounds in the previous few months, but I had recently quit drinking, was eating less, and exercising more, so I did not realize that my weight loss was connected to a larger issue. Now, I had lost 65 pounds in less than a year, and quite frankly I resembled a wraith.
This all happened at the worst possible time, and the ensuing series of events would almost be laughable were they not so very real and tragic.
After five hard fought years since our son Ian’s birth, in which we’ve found ourselves working harder and harder for less and less in spite of our best efforts, we were shocked to find out that due to changes in the economy (it’s not a great market for everyone who’s not a banker or broker), we lost the house we had been living in for five years and were forced to seek other accommodations. We succeeded in finding an opportunity in Las Vegas that looked very promising. However, another set of completely unforeseeable circumstances arose that made this move an impossibility just days before we were to make the move, and in the same time period I was felled by this very aggressive attack on my body. I don’t believe that my wife and I had had ten days off together in the previous five years, but now things got really crazy.
For seven weeks, Monica had to perform at a super-human level. I required twenty-four hour care and was totally immobile. I could not walk, couldn’t feed myself, I could not even make my way to the bathroom. On top of this, she still had to care for Ian (a full-time job in itself), and on top of that she had to completely pack up our home in preparation for a move. It goes without saying that neither of us could work during this period, and between neither of us being able to generate any income and the considerable costs of medications and healthcare services, and moving costs, we’ve been completely wiped out financially.
After our Las Vegas adventure had been eliminated as a possibility, another situation arose that offered what looked like a grand opportunity, so we headed off towards the midwest with an SUV full of enough clothes and necessities, and several storage containers full of our life setting in Northern California waiting to see where we would land. Unfortunately, and again due to circumstances beyond anyone’s control and in spite of many people’s best efforts, this latest opportunity has been put on hold as I’ve become too ill to segue into being functional at a job at this time. I currently am in bed for about twenty hours a day, and I can only be on my feet for perhaps five to ten minutes before I am exhausted.
You’d think a little growth in my belly couldn’t cause such a stir, but here is the score card of areas that it has effected:
I’ve lost 65 pounds and a great deal of muscle mass
Kidney pain and bleeding (several hemorrhages that occurred in May)
Intestines - constant constipation due to impingement
Circulation & lungs (greatly reduced endurance and capacity)
Constantly cold and aching extremities to the point in which typing or even strumming a guitar are impossibilities
Persistent headaches and lack of ability to concentrate
Substantial depression and suicidal ideation
On the good side, my weight has stabilized, most of my blood tests reflect strong function and systemic stability, but I have a ways to go before I will be up and running in a sustainable fashion.
On the rough side, I am having a terrible time maintaining my regimen for shrinking this damned tumor.
When we lived in California, I was having great success with both pain management and controlling the size and temperament of the tumor via THC and CBD oil. However, now we are in Ohio, where cannabis is still illegal and even if it weren’t, we can no longer afford its costs, along with the acupuncturist, the herbalist, and other health care services which fall outside of the allopathic viewpoint. I cannot state strongly enough how important and vital cannabis products have been to dealing with my illness, and not having them available has been fairly disastrous. My stress has tremendously increased and my physical condition has worsened directly as a result. I am often in such pain that I cannot sleep for 24-36 hours at a time, and I rarely take over-the-counter pain meds which are so hazardous to my already weakened kidneys and bladder, and I staunchly refuse to consider big Pharma pain meds which will render me an addict. THC and CBD have been major components of my healing and effort to control the progression of this illness, and their absence is the true crime here.
Today, I feel pretty good, relatively speaking, but the hellhounds are truly upon us.
Since leaving Sacramento in early July, we have been leading the life of refugees. We have done well, and while we have covered our costs and not acquired any new debt, but we are now totally broke. We have less than $200 left in the bank, and no sign as to when we will again see any revenue. There is no money for medicines, services, or anything else for that matter. I have applied for help from the state of Ohio, but their interest in helping people is minimal at best, though having access to a doctor will soon be available, so there is that if it becomes essential. Up to now we have been treating this very holistically and organically, but the means with which to do this have now been depleted.
To my best reckoning, if I keep doing what I am doing, I will be healthy enough to return to work in 90-120 days, and if I’m really lucky, by then some potential opportunities will come to fruition, but the questions remains both as to how we can bridge this gap, and if these opportunities do come to pass.
My family and I have been gifted with having some great relatives, friends, and acquaintances who have helped us tremendously over the last several months, and we have been able to keep our heads above water and a roof over our head, but the water continues to rise, and we are continuing to sink.
Where this leads, I cannot say, but I have been fielding a lot of questions about my health and what is going on with our family, so I thought it time to say something publicly about our situation.
I haven’t done an update in a while, so here’s what’s up!
The good news is that I’m doing a lot better than I was just a few short months ago, but there is still a long way to go. As you may know, I was hospitalized for a couple of weeks, and since my release things ARE getting better! I’m still very weak, and I can only be up and around for about two or three hours before I’m worn out. However, I’m thrilled by my progress. By the way, my official diagnosis is stage four prostate cancer, which has metastasized into some surrounding lymph nodes. Getting better, but far from being out of the woods, I’m afraid.
I have elected to stick with a holistically-based treament regimen, and for the time being I’m not choosing to go the route of surgery, chemo therapy, or radiation treatments. What we are doing IS WORKING, but the sad part is that this means that the various medicines, supplements, tinctures, and other ingestible therapies are costing us approximately $1500 a month above and beyond what insurance will cover.
That being said, we are rapidly running out of money, and I’m nowhere near being able to return to working even a part-time schedule, so we continue to struggle to find ways to keep the coffers from being completely empty.
One thing that is going to happen is a couple of benefit shows here in Dayton that we have scheduled for March 10 (tentatively, at the Tumbleweed and Blind Bob’s). I’ll soon be reaching out to try to find some cool items to raffle off or auction).
We’re going to win this fight, but we still need your help for a few months as we fight. If you can donate, please do, if you can’t, we understand, but would ask you to share this on social media and to your friends and families.
I thank you all so very much for all the support, generosity, and kindness you have gifted our family with over these difficult months, and our gratitude, love, and thanks go out to everyone reading this.
Fighting the good fight, and winning a slow difficult war,
Tony, Monica, and Ian
I haven't updated here for a few weeks, so I thought I should bring everyone up to date.
Over the last few weeks my energy is improving, and I've even gone so far as to join a gym (Kettering Rec) to start rebuilding my frame, but along with that good news comes some very sobering information.
After further blood tests and a CT scan, my doctor has ordered me into the hospital the morning after Christmas for further testing and possibly a surgical procedure that would possibly help my symptoms and to get a grip on what has turned into a rather dangerous situation. I am at risk due to toxicity in my system and my kidneys, heart, and lungs are in immediate danger if we don't act on this now. My doctor and advisors feel it urgent enough that waiting until after the new year was NOT a prudent idea. My fervent hope that by following this path we can alleviate enough of what's dragging me down right now via this trip to the hospital to then allow us to return to a more natural path to healing, but we'll have to see.
This means that while I am feeling a lot better than I was a few short months ago, I'm far from out of the woods, and my recovery will not be as quick as I have hoped. That being said, I WILL continue with my plans for 2019. I may be slowed, but I won't be stopped.
It's a lousy time to be asking for money, but that's the position we are in. Our out of pocket costs are about to escalate and my current spending on medical necessities is roughly a thousand to $1200 a month, and that, of course, does not include the usual household expenses. Anything anyone can spare is tremendously appreciated, even if it is to just share this message with your friends and families on social media. We are also working on a couple of benefit shows here in town for early 2019 (late January or February). If you'd like to play or donate something to raffle, that would be great, too. We have some great people signing on for this from all over the country, and I'm also seeking a headliner to town for this (any ideas?). I've been working with Dana Farley and Brendon Hawk, who are leading this effort.
The outpouring of generosity, love, and support has been tremendous, but I am very disappointed to have this new development show up at a time in which I've been feeling so ready to go, but the universe is telling me to slow down a bit. I've been working very hard to get back to work (as has Monica), but perhaps I have been pushing to hard (hellhounds on my trail?).
All that being said, I am immensely grateful and hopeful. I'll be honest here - if I fell down dead tomorrow (I won't), I'll have died seeing that the world is not the dystopian nightmare I see in the news (at least not completely), but rather a beautiful planet filled with amazingly loving and compassionate people. This does great things for my soul, and helps my frail-assed body to heal.
In the words of my doctor, the news is better than he had hoped, but still extremely serious and urgent. My body is perilously anemic and low hemoglobin numbers are dragging me down a great deal and putting me at great risk. Henceforth my inability to walk more than about a hundred feet, and my general level of fatigue and listlessness. I take a mean picture, but I'm still awfully ill - getting better, but not out of the woods by a long shot.
Note: This is as far as I will go insofar as my condition and treatment. If you have a need to know specifics, please have the decency to due this in a private fashion. I may or may not give direct answers, but I will answer all queries. Surgical procedures and hospitals stays are things I was hoping to avoid, but I am in the best hands imaginable, and I have great respect and admiration for the diverse team of healers who are advising me. They are angels. YOU are all angels. We love you, thank you, and we could NOT DO THIS without you. Please, if you can continue this support, it will see us through. Cracker's "I See The Light" always comes to mind here. To paraphrase, I hope the light I see at the end of the tunnel isn't a train!
Fearlessly moving forward (well, kind of... it's some scary shit we're dealing with here),
Tony, Monica, and Ian (the dude)
I've made great strides over the last month, but there is still so long to go.
Physically speaking, my weight has stabilized, and I'm up to 157 pounds from a low of 148, so that's good news! I'm still having a devilishly hard time digesting and eliminating what I've eaten due to the location of this bastard tumor. I'm able to get around some with the aid of a walker, and I even made it to Fort Wayne to see my dear friend Johnny Hickman perform a few nights ago, but in the aftermath I'm exhausted from the trip and this horrible insomnia, which is unlike anything I've ever experienced.
In further health news, I'll be traveling to New York to see a specialist for a treatment next week, and after months and months of frustrating work, I am finally near able to access a primary care physician. The state of Ohio sucks in this regard, and it is my feeling that they hope you'll die before you get treatment of any sort. I could go to an ER if I had to, but that would cripple us financially at this point. #healthcareforall
That being said, I continue to be amazed at the kindness, compassion, and generosity of the individuals and community that surrounds me. I promise that as I'm healing and in the future I will strive to be an advocate for the causes that do work, and for a better system of governance to protect its citizenry. Yeah, I'm a little pissed off this morning.
Along with the medical treatment I am going to New York for, I am also trying my best to dive back into my work, and have set up many meetings and interviews in New York City. All of a sudden I'm in demand, and if nearly dying to get there is what it has taken, well, I accept that and promise to soldier on. This campaign has been wildly successful because of your giving and generosity, but when this money runs out, I have to have employment and revenue coming in or I'm back to square one, so that accounts for a flurry of activities in that regard. I know for a fact that I'm pushing myself a bit too hard, but I have no recourse, plus I love the work and those I work with and for.
In the upcoming weeks we are also planning a few benefit shows and raffles to continue to raise funds that allow us to pay rent, bills, and to pay for the huge costs associated with paying my healthcare providers and all the things I ingest to keep the fight going.
We are exhausted. Poor Monica never gets to relax, and the strain is god awful. She's done and is continuing to do heroic work. Ian is doing much better as he is surrounded by loving friends and helpers, but it's hard on him, too. It's damned hard on everyone.
If this update seems less upbeat than usual, I'm sorry, but the state of Ohio (and the United States in general) fail their citizens more often than not, but they still find the money to bomb the world into submission to steal their money and resources.
he good fight is being fought by the people as the governments do little but wield sticks of punishment and suffering. This just can't continue like this. I am damned lucky to have a great support system of friends and family, but what about those who don't? My heart goes out t so many who are suffering even more than my family and myself.
To end on an up note, I am planning many new projects for 2019, including plans to finally put together a band and get a record done. This, of course, won't solve my financial woes, but it WILL feed my soul! Here's to Tax Revlon's Battalion D'Amour! The Love Army is being assembled at last.
I love you all, we love you all, and again, thank you all from the bottom of my heart. Again, in many ways this damnable cancer is the greatest gift I've ever been given. It has shown me just how much good is in this world.
Peace and gratitude,
Tony, Monica, and Ian
So, my 59th birthday was fantastic! So many great folks came by, and it was truly one of the most moving experiences of my life. Thank you all, as always!
Again and again I have regaled people with tales of kindness, compassion, generosity, and community, but that's what I'm seeing from my viewpoint.
My viewpoint still largely from the bed, but this morning I am actually sitting at my desk typing this one a real keyboard! However, my mind and body are pretty racked from all the activity over the weekend.
The update of my physical condition is that I'm slowly getting better. Mind you, that means that I could stand at the stove to make chili for some friends, but what that really means is that I stirred the pot a few times after Monica had done all the heavy lifting and prep work, but it was still very exciting to be standing upright and actually doing something. Currently, I can walk about fifty feet before I must stop and rest. Let's see how quickly I can get that number up! Rebuilding some body mass and muscle after shedding 85 pounds is going to take some time and a tremendous amount of work.
My mind has seemingly returned for the most part after my last healing crisis, and for that I am grateful. The frustration at not being able to communicate in the fashion you are used to is tremendous, and my heart goes out to anyone in similar straits. Both my speech and my ability to write has been greatly hampered at various points of this illness, but it's getting much better and I am again (there's that word again) grateful.
My pain levels have decreased greatly, and I am now able to sleep about four hours a night, and though it's fitful at best, I'm grateful for even that. I had been experiencing episodes of sleeplessness for as much as 36 hours at a time, and that makes you pretty crazy (and sounding like a palooka on a podcast after such an episode). As an aside, Monica rode my ass pretty hard as she drove me to where the podcast was being recorded, but I insisted. I'm not a great patient by any means. I try, but it's just hard.
In closing, I'd like to mention that I spoke with several people over the weekend who told me that, quite frankly, they would have come over sooner, but they were just afraid of what they would see. I understand completely, but I would just say that if you come, what you will see is the best Tony Conley you've ever see. A bit weathered, but beautiful to my eyes.
Thanks again to everyone for everything. We continue to marvel at the love we are being shown, and I'm still working on individual thank yous, and as I'm able keep my energy up, I'll work on more as soon as possible.
We love you all, and hope to see you soon!
Tony, Monica, and Ian