MICHAEL'S JOURNEY

Happy belated Thanksgiving all and hoping the upcoming holiday season will be a joyous and fulfilling one.

Ok, let’s catch up. I had an ultrasound in late October to verify that the kidney paths were clear and we could proceed with treatment (chemo). I went to work on Nov 3 and was playing phone tag with the Oncologists office to schedule a meeting for game planning the next steps. After work on Nov 3, I went home, had some dinner, watched some tube and when about ready to turn in I could not. Massive back spasms nearly crippled me and it was all I could do to get to my bedroom. No sleep that night, or the next, or the next. Tried the usual heat pad, ice, heat pad, ice, but nothing worked. Susan took me to the emergency room on Thursday that week. They ran a full MRI and discovered I had two bulging discs in the lower part of my back. Sent me home with some pain medication that worked slightly and did bring some relief. However, they said that what I had been doing, would be the treatment they would recommend. Ice, heat, and some yoga stretching. Was not able to return to work or even get into my truck until the following Thursday. So now I’m out two weeks from the early November date we wanted to get started with the cancer review treatment. Still have some pain in the left-hand side of my lower back, but hopefully it’ll reside. I am able to drive, sleep and be fairly mobile.

We scheduled the oncology meeting for Friday, Nov 21. My Dr prescribed more pain medication for the back and explained to me that I wouldn’t be going through hard-core chemo. We would be mixing two immunotherapy drugs designed and exclusively built for bladder cancer. Unlike some traditional chemotherapy treatments, this will not attack the immune system throughout the body and instead will invigorate and wake up the immune system and attack the cancer cells exclusively in the bladder. In addition, no port needed to be put into my chest area and the treatments would only take an hour as opposed to four hours. This past Tuesday I completed my first one. My schedule will be treatment once a week for an hour for two weeks on one week off. I did get prescribed some medication for nausea. However, here it has been three days later and I don’t seem to show any side effects. Yet.

Have most of my appetite back to will try and gain some of the weight and strength that I’ve lost over these ordeal(s). Had a nice T-Giving dinner last night and just inhaled a large and tasty plate of huevos rancheros.

So for now, time to keep working on the back, ice, heat, stretch, repeat. And once again, thank you all for the prayers positive thoughts and good vibes overall. 

Until next time.

All

Surgery to remove the capped portion of the internal nephrostomy tube went flawless. Only issue – no need for any Fentanyl (the go to radiology pain killer) or any other back up alternative anesthesia. First time I could drive myself home. They used nothing and I felt nothing. Right ureter clear! Middle Eastern surgeon (my third) with my kind of humor and bedside manner. Came in, shook hands and asked if I was ready to leave hospital today as “Tubeless Joe Jackson”. LET’S DO THIS!!. Maybe 20 minutes. Glorious. I have to come up with some Halloween get up for work. Might have just found it. The Joe Jackson character not the doctor for clarity

Phase two done. Please see attached pic if my description of the last three weeks is not graphic enough. It feels like a larger shooter marble pressing against your kidney. Don’t eat or view late a at night. Yeah Fun

Thank you so much for the prayers and support.

Have a most killer weekend. Until next time, which I am not entirely when it will be as I am going to enjoy the medical celebration Phase three is port placement and then the start of chemo.

Send the prayers to the Swedes, not a great month for them. I’ve used my allotment for October. 

ZZ

Hey all,

After dragging around a urine bag attached to a tube coming out of my right kidney for week, my surgery today replaced that with a stint (tube) internally today. There is still a small emergency external tube that is capped coming out the kidney just in case there is some back up or pain, but, if there is none, that will be removed next week which is a five-minute procedure. This was a big deal to me as there was no guarantee the stint could be put in through the tumor bladder area without stirring anything up. It also makes sure the right kidney stays healthy.

It also allows for total physical mobility without the fear of pulling something out my intestines – yuck. I’m gonna miss that ole bag and tube. yeah NOT.

Thank you again for the prayers have a great weekend

Hey Everybody

Surgery for the placement of the Nephrostomy tube went very well. Much more time for the set-up, explanation,internal stress and post op instruction than the actual 5-minute (no exaggeration) surgery. Resting and healing now and there is some soreness but at quick take this was fairly routine as surgery can be. Will return next week in an attempt to have an internal stint placed in the right kidney and will remove external tube. And for those that are interested I was awake during the procedure but glided along nicely on a light dose of fentanyl. Kidney area sore but if draining properly, and it looks like it is, should be able to sleep longer as the bathroom breaks will be much less and in a day or two soreness will reside.

So, there you have it. A bit short and sweet and now as my good friend Tylenol and I have a meet up scheduled in minute. 

Have an awesome weekend all and thank you again for your prayers and thoughts. Hopefully I will have another positive surgery review next week!!

mjc 

Soooo its been a minute.

Was nice to have a couple weeks of somewhat normal routine. 

After reviewing the PET scan completed a couple weeks ago, it has been determined that getting the right kidney draining properly prior to chemo treatment will be necessary and keep the kidney safe and very productive. Not going to be taking any chances backing up the right year into the kidney with the chemo/ immune medication.

On October 9^th I will go through a Nephrostomy which will the process of placing a tube inside the kidney and running that tube externally into a collection bag for the urine. The bag attaches to a Velcro belt like mechanism and can be emptied as needed. A review and analysis will be done seven days later to see how the kidney is working. If working correctly, we will bring another tube internally and run it down into the bladder to drain and keep the original tube in the exterior (just in case) but capped. After another week and another analysis, it will be determined whether the internal tube is working correctly, and if so, the external capped tube will then be removed. Some folks stop and just keep the external bag throughout the treatment however; I just didn’t want to be carrying a bag of pee on my belt for the next three months both emptying the bag and urinating traditionally if I could help it and still trying to work although I may have to in the long run anyway.

The next fun procedure will be inserting a port in my collarbone area, which will be where the chemotherapy /immunotherapy line will be hooked up to making it much easier than poking a vein every time I go in for treatment, which will be approximately three times a month for four hours a session. I don’t expect the chemo/immune to start prior to November 1.

That’s pretty much the update of the new upcoming fall lineups. Personally, feeling good still easily working 40 hours a week. Getting back strength in the gym and have a final show of the year on October 3 in Western Colorado. Hope you’re all doing well. Thanks again for all the prayers and thoughts, and I will let you know how phase one goes when we’re done with it in a couple weeks.

Sincerely,

mj

All,

PET scan completed yesterday. So glad I am not claustrophobic which you are actually asked before you go in. If interested I’m sure you could google the procedure and see why.

Results produced nothing new which was good news. No spreading and no change of plans. Not exactly sure when chemo would start which will be the next step after a “port” will put in me. Another procedure to google if curious. Will keep y’all updated when the chemo sessions start. I understand there will be some type of orientation initially.  Still wavering on having the outer stint plugged into my right kidney. We shall see.

Got back in the gym today and last Friday. Felt great. Rehearsed last Tuesday and will again this Tuesday for a show in Casper WY on 9/19. Back to work full time – zero issues there as well.

Thank you endlessly for all the prayers and thoughts. Feeling great and hopefully will be able to add some of the weight I’ve lost.

’till next time…

mj

Hi all! Just a quick one this week. My PET scan has been pushed to next Friday. See you all then! Thanks for all the love – MC

All,

The thing about any medical diagnosis is waiting for results and direction. Until you know for sure, speculation added with misinformation will keep you up at night, and it did. We live in the Internet age and you can find just about anything you want to find if you look hard enough. Even cures for cancer. After two months of living like this, I now know direction. Which for the first time in two months is somewhat comforting. I’ve spoken with two surgeons, an oncologist and two general doctors, one traditional and one holistic.

Today’s two-hour session with my oncologist was easily the most informative and educational. I was able to see my CT scan and have it explained to me in any detail that I wanted and he answered any question that I asked. The parasites have attacked the inner wall of my bladder, penetrated through to the muscle, and are on their way towards my right kidney. I will have my bladder and prostate removed. The ureters will be bridged flowing from the kidneys to a single intestinal tube which the surgeons will make from other extra pieces of intestine, and then route those outside of my lower bladder into a pouch which I will have to wear for the rest of my life. That pouch is removed every four or five days. Initially, when I was informed this could be inevitable, it was quite shocking, but, after research and education I find myself hardly alone in this situation and when boiled down to the core, it will just be a different way to urinate. Empty the bag, reattach, and go back and finish watching the game. Drive on road trips for HOURS.

I really thought today was going to be quite life-changing. My thinking and speculating that was most worrisome to me was due to the fact that I would be going through chemo therapy. I was thinking I was going to be handed a schedule to sit in a chair a couple times a week, have energy drained for my body, lose my hair and basically live in hell for 3 to 4 months. I also speculated that today would be the day that I really would psychologically feel that I had cancer. By far the most informative, sincerely caring doctor on my team was the oncologist that Susan and I met with today. Before he talked about any scheduling or information regarding the treatments, he spent nearly 20 minutes finding out about me. What I do. What I’m about and overall, where my headspace was concerning these parasites in me and how they have affected me psychologically. How unbelievably refreshing. Very emotional. For the first time I did not feel like a hospital meal ticket and someone actually gave two shits, actually three about me personally.

He knew about the most up-to-date drugs used in immunotherapy and we will be using some of those during this process. In addition, there will be no hair loss, there will be no nauseousness. Yes, I will have to spend four hours three days a month; that’s right three days a month for the treatment for the next three months. The goal is to reduce the size of the tumor therefore when the bladder and prostate are removed, all of the parasites will come out with it. It’s the eviction notices and if ignored the sheriff IS coming regardless and you are going to go one way or another. It is generally a 4-to-6-week recovery after surgery; however, his thinking was that that I am in pretty good shape that it should only take two weeks or so which include a 2–4-night hospital vaca.

There is also the problem with the blocking of the right ureter coming down into the bladder from the right kidney. It’s highly probable that a stent or tube will have to go into my kidney and drain to the outside of my body, ensuring that the kidney does not back up. This is especially important during these treatments as the kidneys are used to clean out the drugs used during the treatments and they can’t afford to be backed up. So I got that going for me too. But it is outpatient surgery – they stick it in, hook up the bag and you go home in an hour or two. Hopefully pain meds are in that lineup as well.

Now all this fun doesn’t start to happen until sometime after next Friday of when I will have a total body PET scan. This scan will identify any additional parasites that may have wandered off from the reservation looking to start their own clan of terror in some of the other organs. When reviewing the CT scan though, none were identified and it didn’t look like that had happened at all. There was no sign of them in my lungs, pancreas, kidneys, gall bladder, heart, gizzard or quite frankly anywhere else on the scan.

After the surgery and recovery, more than likely in January, the thrills don’t stop there. I will be taking 30-minute immunotherapy hits once a month until September next year, just to make sure that none of these parasites decide to ignore the eviction notice and try their hand at squatting.

I will also go through a hearing test, immunotherapy drugs, play with your ears and actually make them ring. We want to make sure we know what frequencies I am able to hear and that we are not going to mess with them at all. The Oncologist (Dr. Yousef Gaffar) btw, will also hook me up with a nutritionist, which I will use in conjunction with my holistic doctor to offset any of the side effects of the chemo although Susan and I were a bit shocked to find out there will be very little and I would miss very little of the things I like to do in my life, including exercise, music, travelling, maintaining my crib and keeping a full-time job. My employer, CAI Designs, has been more than awesome accommodating this process up to this point. One of the other fears that I had was that this could cost me my job. It’s not going to.

Maybe the most refreshing part of this two-hour consultation was that this type of cancer is difficult to detect with a modern physical. The only way to be sure that you have this is with either a CT or Pet scan or in my case blood is detected in your urine which you would never be able to see with the naked eye. Age is very much a factor. Difficult as that may be to swallow. It was actually reassuring somewhat that lifestyle, diet or environment could not be directly attributed to this particular cancer. I’m sure they may factor into it, but for now it is mostly attributed to one to two pack a day smokers, firefighters or any trade that find themselves around smoke and chemicals, as well as any other trades that may deal with harmful chemicals that work their way from the lungs to the bladder. It is also not believed to be in any way generational.

If you are still with me, sorry about the blah blah blah but that is the update for now. Looking forward to a three-day Labor Day weekend as I hope you all are as well and for me a whole week that I do not have to worry about anything until next Fridays PET Scan.

thank you for all your thoughts and prayers

Drove down and picked up four take-home tests from my alternative doctors office/Doctor Singer. Urine saliva and stool tests.

Pathology report, confirming what the surgeons had thought would be the outcome. Not great test results from the blood test yesterday as well showing some possible blockage in the right kidney. Scheduled an ultrasound for this Tuesday to determine the extent of blockage. More than likely facing another surgery that will divert the ureter from that kidney to a tube as I understand it, coming out my lower abdomen or back. More fun.

I will be completing the take-home test this weekend and have an appointment and consultation with Dr. Singer at 1 o’clock to finish up the rest of the test and game plan out.

Thanks for the great comments on the blog website however I cannot take credit for it. That was done completely by the lovely and talented Miss Laura Saggers.

Bye for now enjoy the weekend – Mike