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'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
The true definition of an optimist is someone who in spite of losing 75 pounds and being unable to keep down a glass of ice water tells you they are getting better!
It's true, the last few weeks were pretty damned difficult, but honest to goodness, things ARE getting better.
Progress is very slow. My body seems to be getting rid of everything non-essential, and I would compare it to stripping a car down to the bare metal in order to re-paint it. This even relates to foods, nothing tastes right except for a few things I can ingest and keep down.
That being said, my optimism, faith, and hope are unflagging, and much of this I pin directly upon YOU! Your gifts, your visits, your calls, your messages - these are all gold in the realm of the soul, and my soul is filled with love, thanks, and gratitude and as scary as this is, it is your response which gives me the strength to face every day with the necessary mindset to fight this fight.
Thank you. Thank each and every one of you. I love you. We love you. Thank you.
A special note to all of Ian's sitters and visitors. I know not of a better gift that could be bestowed upon a young child than the gifts you give the dude in terms of wisdom, experience, and love. This will stay with the dude forever, and for that we are grateful beyond belief.
We thank and love you all,
The Conleys - Tony, Monica, and Ian
Thank you. Your response to our plea for aid & help has been tremendous, and while we will be reaching out to you individually over the next few days, I did want to touch base with you all.
As many of you know, the last few weeks were quite treacherous, but things have stabilized, and at last I can communicate more easily. Things are better this week, and looking much brighter.
I would like to thank all of you amazing folks who have offered us so much and in so many ways from helping us care for Ian, visiting with us, to contributing goods & services that directly help us heal. The kindness, generosity, and compassion we have been shown has been a very beautiful thing to observe. In these fractious times it is life-affirming to see a community come together in a way that evades so much of the world these days. For this, I thank and love you all.
I'll have much more to say as soon as my strength builds, but I wanted to give everyone a brief update.
With love and gratitude,
Tony, Monica, & Ian