First and foremost I want everybody to know that I'm doing really well emotionally. I laugh at my situation, I laugh at cancer every chance I get. I've laughed about all the stories about myself as well as my sibling and family memories. But the bottom line has I'm not frightened and I'm not irrational as a result of the possibility of dying. Remember, no one gets out alive. But I'm at a good place...very much compos mintos
So, let's get the fact stuff out of the way. I've had no further imaging or blood work done since PSMA Scan at UCSF 2 or 3 months back. But I don't need pictures to tell me what I feel.
My torso aches BUT, fortunately there's not any kind of stabbing or other type of pain with the metastasis to the lungs, liver and seems like there was some other organ involved I don't seem to recall call. At one point, you give up counting and ya just gotta go.......hey dude, ya got cancer and eventually it progresses. As far as pain goes, it's a bit different than it was six months ago. I've had the peripheral neuropathy for some years and just general achiness like down in my bone achiness.
What's different now is it is a pain that runs from my pelvis down my left leg and the beginning of the same thing on my right leg. The best guess is this is caused by swollen lymph nodes (The medical term is bulky lymph nodes). But instead of didn't just being swollen and bulky, now they're causing pain. A STAT ultrasound of my left leg showed Deep Vein Thrombosis
(DVT) running the length of the leg. A bit alarming as DVTs can break loose and hit the lungs and they then become known as Pulmonary Embolism.....and those just suck because they can hit your lung and just flat out kill ya! I mean the very idea!So I've spent much time horizontal, leg propped up or using assistive devices and a blood thinner has been added to my medicine regimine, so we'll be talking about the offending lymph node in the next week or two. Might just radiate that lil' bastard. I need that leg back.
Which leads us to the subject of pain control. We did change meds to further deal with pain. I won't go into specifics; but my physicians and and others involved seem to finally understand that this is wicked pain, I have quite a tolerance and it will only get worse. I continue to use medical cannabis, oil, flower, sublinguals, vapes and these days more for palliative relief than any recreational need. I remain of the belief that judicious use of the right combination of cannabis has increased my months long predicted life span back in 2014 to 8 years come March 2022.
But things are getting real and may advance faster than I expect.....who knows?
With the arrogance of youth, when my father spent his last year fighting lung cancer (d - 1989), I thought, I mean I really believed that I understood what he was going through. I was just sure I knew. Sure that I understood just how exhausted/fatigued he was; sure that I understood how frustrating memory lapses were; absolutely convinced that I knew for certain how bad that pain had to be and how it must be being well cared for because they were giving him MORPHINE for god's sake! (There are only about half a dozen stronger, legal pain meds).
Yes, I thought I knew all these things. I knew I did!
But I really didn't. You cant understand this until you go through it. Not the fatigue, not the pain, the pain you can't really explain to others and that they can't always see. The kind of pain one learns over 8 years that is less aggravated if one doesn't thrash, scream and and raise the BP; all it does is make it worse; not the loss of your body, not the loss of control of so much of your life. I just didn't get it. I'm sorry Dad. The family was just trying to do the next right thing. But you died an undignified death in a place you didn't want to....a hospital.
You taught me many things, but one of the most important was to try to leave life from your home surrounded by loved ones.
We didn't get that done for you. I'm sorry.
So, back to my impending demise (hell, I don't think we're talking more than a year and likely less). My pain increases quickly; my mobility and ability to do what I'm used to doing decrease rapidly. As to my biological age due to treatments over the last 8 years they tell me I'm 10 years older (+/-) physically, my memory is challenged due to chemo brain (been a constant since 6 doses of Lupron in 2014) as well as the need to take strong medications. I'm having to make more detailed notes. My family and I need less visits and involvement....at least for right now. There will come a day I'm sure more is needed
I can happily report that there is little if any ED. I can urinate like a champ with Flomax and pain meds. Bowel issues and constipation are very mild and I'm pretty darned regular. Not that there is a long line of suitors but that's OK!
I've suffered no shortage of phenomenal loves in my life with some of the most gorgeous men including those that worked in certain industries I have no complaints. I've had 3 breathtaking love affairs, each in their own way. The most recent particularly. I've had good love.
I've made 8 years of relatively decent QOL, although there have been some rough patches. But I made it........I'ma tough mother fucker! But I try to live today and not live yesterday nor tomorrow. I'd be lying if said there was no added anxiety......no apprehension
I'm not down and out. Through the generosity of family, I have a beautiful home, I am awash in love and care. I'm re-establishing important.......no, unbelievably important relationships. Both family and long time friends. Also, I can say that Hospice is getting better and more in tune with my needs. For this we are grateful. Chronic pain is a bitch. But no one said life wouldn't be a bitch.
I have things I want to write, photos to put into a montage.
But I ain't goin' anywhere just yet, mark my word. I got laundry to do and I am not departing this sphere without vacuuming under the bed.
Much love..........
