Hmm, sensing a bit of a trend with that title. Going to be a pretty dark diary. So let’s start back just about 6 months ago when I got the word I had a couple of kidney stones oh and a side of bladder cancer. So 2 surgeries within 3 weeks to get rid of both. What freaking fun. So cancer was knocked out for the time being. Kidney stones removed and pain every time I took a leak. What freaking fun ! NOT.
About a month later I had a couple of nerve blocks done to try and help with the growing pain in my upper back. UGH no freaking help at all. Still having pain when I take a leak and it’s getting worse. So suck it up and wait. It’s probably just residual from 2 surgeries down there in 3 weeks. Well come November it is still hurting so off to the doctors again. More good news after 2 CT scans ( I now glow in the dark. Jean uses the light to read in bed at night but she is thinking of adding a dimmer switch. ) More kidney stones in the left kidney and an unknown mass in and on my right. Wonderful news to get right before Thanksgiving.
More surgery scheduled. This one for Dec 21st to remove the 2 kidney stones on the left. A must before touching the tumor to help make sure my kidneys do not shut down during or after the surgery to remove the tumor. Right before surgery I get the news that while it is not definite, the mass/ tumor whatever is most likely Cancer. Woohoo Christmas trashed. About the only good news is no stent so surgical pain was pretty low. Scheduled the next surgery for Jan. 25th. More tests etc. and now it is off to surgery to have part of my kidney sliced off.
This is fun ! Get there on time and doc is running late. Big fun is the huge boil on the inside of my thigh that has decided to show up the weekend before surgery. Surgery may have been put off. Meanwhile no presurgery drugs etc while we wait for the doc to take a look and make a decision. Finally it is a go. Still no presurgery drugs. I get wheeled into the OR wide awake. Strapped to a narrow table and my arms strapped to wings on the table and spread wide. Finally some drugs to keep me from going NUTS. Doc told me after they had a huge fight to get me under. Took much longer than normal.
Surgery went well, according to the doc. In my own view not so well. Woke up in recovery screaming from pain worse than any had ever felt. I swear it took forever to get under control. My side felt like it was being crushed and ripped open.
I started this the day i got home from the hospital after having surgery to slice out part of my kidney. Truth is I would love to get a couple of new ones that DON’T make stones. Life has it’s ups and downs in most people’s lives but mine sure seems to be stuck on the down hill side of the scale. Since that great news it has not gotten much better. Bladder cancer has made a return to the scene and I have had to endure six fun filled weeks of chemo treatments. I did quit smoking and with the exception of a couple of cups of coffee in the morning I am only drinking water. Problem is that is just a small portion of my issues. I am SO very tired of fighting. I can’t just give up though. Life is supposed to get easier as we get older. BS ! In my case it seems to keep throwing obstacles in my way. Jeez ! Just a little while after my January surgery I turned 50. Too bad my back had reached that age about 20 years ago. My legs are basically numb. Well except my knees which HURT and ache a lot. My spine feels like someone has decided to wring it out daily while stabbing it occasionally with a nice red hot poker. I get this wonderful sensation of fire racing down both arms and the backs of my hands are going numb. Getting into the car is a fun adventure. If I am not very careful I end up with extreme pain in my hip and groin. Oh boy what FUN !!!! Everyone should experience that ! Then we get my wonderful kidney stones and the pain they bring. I swear about the only thing that does not hurt is my head. That is probably because it is made of concrete !. I swear my life’s theme song is Denis Leary’s “Life’s Gonna Suck” ! Thankfully I am still able to work though that would be impossible if I actually had to go in. The amount of pain I am in daily would probably triple if I had to go in yet no one knows just how badly I am hurting. Most days my pain meds cut my pain down to a nice even 6 or 7. I am scared to ask for a dosage change due to all the BS the government is pushing about the opioid epidemic. My life revolves around doctor appointments and work. Going out is just about impossible. Predicting my good and bad days is like playing roulette blindfolded. Kind of sad that I look forward to being able to go to the store. Most days that is out, even a short trip wears me out and increases my pain immensely.
I wish I could describe what living in pain was like to people who don’t. Even those who know us and live with us have no clue what we go through daily. They know we have trouble but not just how much. We put on a happy face and hide our pain. I gobble ibuprofen like jelly beans. Muscle relaxers are about as effective as aspirin. Heck even high doses of opioids does not put much of a dent in my pain. When it gets real bad even those seem to quit working and the pain will set at about a 9 all the time. What is amazing is that we can become accustomed to living with pain at those levels. We still function when others would not. We do it to try and keep our life intact. We don’t want to give up and let the pain win. Kind of funny but when I am having some of my worst days pain wise I have some of my best work days. I am thinking that concentrating on my work and music keeps my mind off the pain. Better not tell my boss ! He might want me to have more bad pain days. ( Actually he is a pretty decent boss ! He seems to really care about all of us. Got to say one of the better bosses I have worked for !) Having lived with this pain for almost a decade it seems like I have yet to find any secrets in dealing with pain. Heck I can’t even keep bad days from happening no matter how much I want them to stop. Seems to me we each try to deal with it in our own way. Some of my online friends color. They make some truly awesome pictures but I am more of a color outside the lines guy so that is kind of out for me. I used to love working with my hands. Doing wood work or working on the car. Both of those are out until I can find a way to do them without adding to my pain. It is really hard to adapt when the body part that hurts the most is what connects all the others. If it was an arm or leg I could maybe adapt to working with the other. I have this vision of the book cases I want to make for our living room. Just need to figure out HOW to build them with out messing my back up more. For the time being guess I will have to continue to build in my head.