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Introduction
January 23, 2021
As of today I am 69 years old. That's 30 years longer than I though I would live.
Let me start by saying writing this page has been extremely difficult for me. Not just the subject but right now my brain is quite sluggish making concentration hard. I've actually started this page a number of times over the last few weeks but have been unable to get past the first paragraph. So with that said, here is an update to my health as of the last indicated date below. I will try to update the page as things progress.
May 28, 2021
On Wednesday, May 28, about noon, I went into my doctor's office and told them I was having trouble breathing. I was next door getting some blood tests in preparation for my next Lupron shot next Wednesday. They suggested I go to the emergency room. After all the tests, turned out I have a mild flu virus. Very odd one, the only symposiums are shortness of breath. No fever, no diarrhea, no coughing, no sinus drainage, just breathing difficulties and quick exhaustion.
I stayed in the hospital overnight Wednesday and was finally released late Thursday afternoon. I'm now back home and doing my best to rest a lot.
May 10, 2020
Just got back from the doctor's office (1:00pm) where they removed the last catheter. For the first time in three months, I am catheter free, YEAH! I'm still quite sore but I am able to urinate almost normally.
I'm due back in about 2 weeks for a follow-up and my next shot of Lupron. I asked one of the aids about the cancer that spread into my bones and she told me that with the chemo regimen I am on, there should be no further spreading of cancer.
Other than all the pain, doctors' visits, meds and recovery, I have lost all desire for any kind of sex. I've even turned off my 'guy' screen savers as they no longer have any interest for me.
It will probably be the first week in June before I add another update.
Now to sit back, relax, and let my body heal.
I had my procedures yesterday (see next section for descriptions). I spent last night in the hospital. I'm doing well. I'm feeling better than I have since last August. The catheter in my side is gone.
I still have cancer, it's just under control. So we will see how much longer I can be around.
This morning they took out the catheter in my penis but due to swelling of the urethra from the surgery we had to put it back in. I need to setup an appointment with my urologist on Monday or Tuesday to check and see if we can get rid of this other catheter.
I'm still dealing with my bladder infection but it is under better control using the antibiotic Bactrim. I've been on Bactrim before. For the first 4 or 5 years after I was diagnosed with HIV, I was taking it. Turned out my current infection is from Klebsiella pneumoniae ssp pneumoniae with a concentration of 50,000 - 100,000 CFU/mL.
I'm now scheduled for my procedures for May 6. I'll be having a Transurethral resection of the prostate also known as a TURP. You can think of a TURP sort of like a roto-rooter of the urethra. At the same time I will have a stent exchange bilateral. This is to replace the stint from my right kidney to my bladder which is clogged.
My sister is flying into Denver on Wednesday and will stay with me for some length of time to be determined while I am recovering.
More to follow after I have recovered from the procedure enough to work on the computer.
On Monday April 5, I went into the urologist office. I had called several times trying to get the prescription for continual treatment but have gotten nowhere. Turns out they didn't have my Social Security number. Am getting very frustrated with that. The initial treatments dropped my level to less than 5. However because I haven't been able to get the prescription for continued treatment, as of last Friday (April 9) my testosterone level has climbed to 17.5. not good.
I also had them take a urine sample which they sent off to have analyzed. Last Thursday I was put on Bactrim. The infection is now clearing up and I feel better than I have in several months.
I have my next appointment with my urologist this coming Wednesday (April 14) when we will evaluate my progress and determine the next steps.
On Tuesday April 6, I had a sonogram and some type of radiation scan. On Wednesday I had my follow-up appointment with my cardiologist. As far as my heart is concerned, I'm in great shape. He said I have a minor leak on two valves but that is normal for someone my age.
I seem to feel that the advancement of the cancer has been halted, but that is just my impression.
I ended up in the emergency room again on the 15th (or was it the 16th? I've lost track of the days). The catheter in my penis had become clogged with infection. The end of the catheter where it entered the bag I could see what looked like a cigarette filter which was the infection. In the very painful process of trying to force out the urine out of my bladder, the balloon on the end of the catheter ruptured and the catheter came out but my urethra was still restricted from the cancer so no urine came out.
We had just received about 2 feet of snow the day before and I was in no shape to drive so had to call an ambulance. The hospital replaced the catheter with one with a much larger tube and gave me a more powerful antibiotic via direct injection. I'm now on a 7 day regiment of Cephalexin which seems to be doing the trick. I am no longer seeing the milky colored urine in the bags.
I called my infectious disease doctor's office and got them to schedule HIV viral load and CD4 count tests. The urology doctors I have been seeing didn't know the codes for those tests. I will have them done Friday. I suspect my CD4-absolute count is going to be much lower than the last test back last July which was 360. Learn more on CD4 numbers.
I'm spending a lot of time in bed resting. On average over the last couple of weeks I've been sleeping between 10 to 12 hours a day, and spending most of the rest in bed listening to audio books.
Unrelated but the good news is I found a very good mobile RV repair guy named Keith. He has gotten my furnaces working again but one still needs a replacement blower fan. The fridge quit working last week but he got that fixed the following day.
Water has been a major headache. Numerous issues have been triggered by the shower head not being properly sealed with Teflon tape when the trailer was built. Over the last 2 years it has begun leaking which has in the last few weeks become major. I finally realized the issue when I started finding water on the outside of the shower. On Tuesday we emptied out the storage area above the refrigerator, unscrewed the side wall to get to the shower and found the leak which is now fixed. The water was running down inside the wall and entering the furnaces which destroyed 3 circuit boards and the bearings in one blower motors. About a month ago we had nighttime tempters in the single digits and without the furnaces the water manifold (where all my pipes come together in an outside cabinet) froze and broke. I finally got word that a new one is now on its way and should be here in the next couple of days. In the meantime, Keith installed a temporary fix so I had at least had some water. All because someone didn't put quite enough Teflon tape on a fitting.
When it rains it pours. I miss my Tom so much. While I use do these kind of repairs, I can no longer manage them due to arthritis and general older ages. Tom always dealt with getting things like this sorted out.
Sorry for the late posting. I have not been feeling well the last week.
I now have dual catheters. One going up my penis into the bladder the other comes out my side to drain my right kidney.
The dual catheter has been causing some difficulty. The tube of the first one is about 3 feet long allowing me to manage the bag by placing it on a table or bed while I dress or undress. The tube on the new one is only about 6 inches long. Not long enough to lay down on a counter while I manage other parts of my clothing or the other catheter. If it accidently falls off the bed it yanks on the balloon on the other end with a "yelp!" as the result.
I've improved the mount by using some 2 inch double sided Velcro as a belt around my waist with a short piece hanging down from the belt and fastening to some sticky Velcro on the bag.
This morning was the first day in over a week when I have gotten up feeling fairly good but after moving around a bit I'm hurting again. I think the issue of having both a stint and a catheter hanging in my bladder, which is also inflamed, is creating the most discomfort.
Last Wednesday (March 3) I got the second and last Firmagon shot. I can feel that the treatment seems to be working but I still have a long way to go. I should be starting the Lupron treatment soon but have not heard from the pharmacy yet.
I had thought I would be discussing a possible operation last week, but that discussion will not take place until the middle of April.
The Firmagon treatment (mentioned lower down the page) appears to be working. My PSA has gone from over 200 a month ago, down to 2 as of last Wednesday and it seems to me I have less swelling in my groin.
Last night was one of the worse night's I have had in years. The stint going from my right kidney to my bladder is definitely clogged. Was unable to empty my bladder and the pain kept me awake all night. About every half hour, I was up trying to force urine out of the bladder up through the stint to my right kidney where the drain is. Continuous massive pain and a lot of crying but no luck moving any urine. Around 3:00 am I actually got about a table spoon full of urine out of my penis but only after applying so much pressure I was afraid I might burst something. About 5 am, I finally did another very painful self-catheter which allowed me to empty the bladder and I was finally able to get to sleep about 6:00 am, 22 hours after wakeing yesterday morning.
Today I got a second catheter installed in my penis. Not as traumatizing as I thought it might be due to the doctor giving me a valium tablet half an hour before the procedure. The new catheter will be sore for a few days but at least I shouldn't have to strain the way I have been doing the last few weeks.
Right now I am on an 8 hour as needed dose of the pain killer Tramadol which is at least allowing me to move around some. Am heading for bed now at 8:00 pm. The next update will probably come the evening of March 3.
Last month, I had a stint placed between my right kidney and bladder. The cancer has blocked the exit between my kidney and the bladder. They also placed a drain tube from my right kidney which drains out my side into a bag. For a short while, before the stint placement, I was using a self-catheter which was extremely painful so when this drain was installed in my side I've been using the catheter drain to urinate. Last week, (February 14) the drain was slowing down causing me to have to strain to urinate and that wasn't sufficient to empty my bladder.
Friday evening I couldn't empty my bladder at all. My friend drove me to the emergency room where I was diagnosed with a urinary infection and put on a regiment of antibiotics. They seem to be helping some however; the only way my system has to expel the infection is through the stint and catheter which are very small tubes. I believe the stint is being clogged with the infection which is blocking my ability to get rid of both urine and the infection. I tried drinking lots of water but that just backed up the system creating major pain throughout the system.
A couple of days ago I started using the self-catheters again but they are extremely difficult and painful to push through my urethra, so I can only do one or two a day. It takes me about 3 minutes to push the cathter about 8 inches and I can tell it is doing some damage when going past the blocked areas.
Tomorrow, Feb 24, I have an post-ER follow-up appointment with Dr. Luke. I will ask him if it might be possible to install a catheter directly into the bladder through the urethra so I can flush out the infection.
I should have another update by Thursday or Friday.
Quick update. Thursday I went to se a new GP. My old one is way south of Denver and is 150 mile round trip. He recommended a cardiologist and I have an appointment setup with him early next month..
I'm doing OK but am very tired all the time. Can only work on the computer for a couple of hours before becoming exhausted.
Not sure but I probably won't have another update until the 3rd of March, but will update earlier if something changes.
Today we got the results of the bone scan and the biopsies. I do have advanced prostate cancer. The cancer has gotten into some of my bone structure. Some technical details can be found at the end of today's entry.
Because of my condition, AIDS, weak immune system, previous anal cancer radiation and chemo treatments, the doctor doesn't think it safe to totally remove my prostate. Instead I have been placed on a medication regimen to kill my testosterone production. The doctor explained the technical reason which is a bit too complicated to properly explain here, but essentially testosterone has a tendency to enter cellular receptors of the prostate and other organs. The cells of the body regenerate themselves on a regular basis. Normally, these cells know when to stop regenerating, however in the case of cancer, the cells have lost that ability and will continue to regenerate new cells much faster than what is needed just to replace cells that have died or been worn out.
Today I received my first intravenous dose of Firmagon which stops testosterone production. I should get a second dose on May 3. Later I will probably start on an oral medication called Lupron which will help prevent testosterone from entering the cells.
At that appointment next month, we will reevaluate how the medication is working and make decisions on further treatments and adjustments from there.
The doctor thinks we will probably preform an operation (which I can't remember the name of) which hopefully will open up my urethra and allow me to urinate normally.
I did ask him what kind of life expectancy I might be looking at but he was hesitant to guess at this point due to lack of data on how I will react to the treatments started today. When I go in on March 3, he may have a better idea after analyzing test results.
So that is where we stand at the moment.
Some technical data:
NM Bone Whole Body scan:
Findings: 24.6mCi 99 Tc99 HDP MDP was administered. Multiple foci of abnormal radiotracer activity are identified throughout the visualized thoracic structures including the posterior calvarium, multiple ribs, thoracic spine, iliac bones, right acetabulum and right proximal and distal femoral shaft. Renal excretion is satisfactory.
Surgical Pathology final result Diagnosis
I had my biopsy yesterday. Little bleeding but not bad. Will go back to this doctor on Tuesday when I will get a shot of something that will remove all my hormones. We should have the biopsy results by Tuesday then we can determine a direction to go from there.
Yesterday I had my appointment with the other doctor. I'm really bad with names but in this case I'm remembering the doctors with a mental reference. Their last names are Luke and Clark, so I'm just thinking Luke Skywalker and Clark Kent, LOL
I'm very impressed with both doctors. Yesterday, Doctor Clark checked me out and I got a fast appointment for a biopsy and sonogram for this Thursday, January 28. Also finally got my bone scan setup for next Monday, February 1.
That's the current schedule. I will try to post updates later this week on whatever the outcome is.
As of this morning at about 5:00 am I passed my 69th birthday. While I am trying to be positive, I am also trying to be realistic. I don't expect to make it to 70.
Last week I was diagnosed with advanced prostate cancer. We still need the biopsy but it is pretty clear from the MRI scans I had last week that it is cancer.
I'm not going to go through the issues I have had with doctors over the last few months, I've already told some of my friends those details. If I can gather the strength I may add those experiences to this page at a later time.
On Monday, Jan 25, I have an appointment with a second Urologist who has more experience with cancer patients who have unusual situations like me with HIV, weak immune systems and previous issues with other cancers and their treatments. The point here is to get a second opinion on the best procedure in going forward.
I am still waiting for an appointment for a full body bone scan to see if it has metastasized into the bone.
I am currently living in my trailer on a friend's farm north of Denver which is close to the doctors and hospitals I am dealing with. He and I are helping each other out with driving to medical appointments and errands. My truck is still in the body shop dealing with the trailer hitch damage I encountered a few months ago. Current estimate is it should be ready mid-February. In the meantime, I have a rental truck.
Since I don't know what the outcome of all this will be, I don't know what will be happening with my websites. The hosting of my personal sites and a few others dealing with rodeo are paid through October 2021. If I don't come out of this on the other end that will give the other organizations time to find new webmasters. I will be contacting them individually over the next few days.
Why the scraggly beard? My partner and husband Tom cut my hair and beard for the last 35 years. Since he passed away in 2018, I have not found a barber that would cut it the way I liked. So I decided to shave my head and just trim the beard. A few months ago, I decided to let the beard grow just to see just what it would do. It's never been this long before. I'm not too happy with it but with the illness, I have not felt like doing anything with it. Maybe in the next few days I can work up the energy and motivation to clean it up.
I'm looking for some person, organization, business or museum to take over the hosting of the Drummer Magazine collection I have recently posted. If you are interested in helping, please contact me at the address on my home page. Annual cost with the current host plus domain charges is $70 a year.