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July 14, 2017 Way back near the end of 1991, I developed a bad pneumonia. They kept giving me various antibiotics which didn't help. By the time a doctor recognized I might have AIDS, it had progressed to a critical level. I was placed in the hospital where they determined I had Pneumocystis pneumonia. While they were trying to flush out some of the buildup, I came within a few seconds of dying.
Anyway, after spending 2 weeks in intensive care, and another 2 weeks in a private room, I was ready to go home, but was still very weak. The last few days in the hospital, I was having extreme difficulty achieving a bowel movement. What I didn't realize at the time was because the only thing I had been able to eat the previous 3 weeks was hard boiled eggs and milk, there wasn't anything to excrete. The resulting straining was what caused the beginning of my hemorrhoids. Because of my HIV status, the doctors advice was to leave them alone unless they became a serious problem.
Fast forward 25 years to late 2016, and I began to notice an unusual growth at my rectum.
On May 17, 2017, I had a colonoscopy and was referred to a Colorectal Surgeon to have the hemorrhoids removed and the growth biopsied.
The procedure was done on June 23 and the biopsy results came back on July 11 when I found out the result was positive.
I am now scheduled for my initial chemotherapy and radiation treatment consultation on July 26.
At this point (July 14) the prognosis is very good. The surgery went well, which I am told is the worst of the procedure, and I am healing nicely with no apparent complications.
July 22, 2017 Anatomical Pathology Report (June 23, 2017)
Received in formalin labeled "Harrell, Alfred" and "right anterolateral hemorrhoid" is a 2.5 x 1.5 x 0.8 cm tan-purple wrinkled rubbery excision of skin and mucosa which is inked at the surgical margin, serially sectioned and submitted entirely in OA17 -1000 Al.
Microscopic examination is performed.
Final Diagnosis:
Right Anterolateral Hemorrhoid, Hemorrhoidectomy
July 26, 2017 Just returned from my consultation and there is good news and bad news. The bad news is my latest PSA test is high. This means I could have some prostate cancer. So I am now being scheduled for quite a few different procedures, including a biopsy to determine whether I do indeed have prostate cancer too.
If prostate cancer is present, then we need to treat both the anal and prostate cancers simultaneously. If it is not present, then we will simply treat the anal cancer.
My first appointment is next Monday, July 31, to have a PET scan to determine the distribution, if any, of the anal cancer so treatment can be specific to the areas needing work.
The next day, August 1, I go in to get a chemotherapy port placed in my chest. This will facilitate easy injection for chemotherapy treatments.
Then on August 9, I go to a urologist for biopsy to determine whether I do or do not have prostate cancer.
July 31, 2017 The PET scan went well. I almost fell asleep in the machine but was awakened just before I was out. Will get the results on Wednesday. Tomorrow is my Port Placement at 7:00 am. That's too early for me. We will have to get up at 6:00 am. I don't normally get up until 9:00 or 10:00.
August 1, 2017 Had my Port-a-cath placed today. A port makes the chemo treatments easer. Here's a 17 minute YouTube video of a port placement. Caution: This video is not for the squeamish Port Placement
August 2, 2017 Results of the PET scan are very positive. There is no visible sign of cancer, however, we will still go through the Chemo and Radiation treatments just to make sure there are no lingering cancer cells in the area.
To the right is one of some 900 images produced by the PET scan, pointing out the major organs. In a PET scan, the radioisotope settles in organs and cancerous cells which show up as dark areas. In this scan only the main organs showed up which is very good. The radioisotope has a half life of about 90 minutes so within a few days it will be totally gone.
The next update to this page should be posted the evening of August 9 after I have my appointment with the Urologist. After he has a chance to take any biopsies and have them analysed, we will determine which forms of treatment are needed. If I have any other cancers, we will treat them both at the same time.
August 11, 2017 My apologies for the delay in posting. We were preparing for a road trip to Santa Fe for a rodeo and I just didn't have the time I thought I was going to have.
The appointment with the Urologist went well. He did his finger thing, and didn't find anything of concern. He did indicate I had to cut back on my testosterone, which I am in the process of doing, as that can effect PSA test results. I should be down to 1/2 ml every two weeks by my next injection.
My next currently scheduled follow up appointment is on August 22. So for the moment everything is on hold. I will be seeing the Colorectal Surgeon for a follow-up on the 25th and my HIV doctor on the 23rd. Probably the next update to this page will occur about August 26. If anything happens before that I will do another posting.
August 22, 2017 Had a follow-up appointment with my Urologist today. PSA is going down and he doesn't see any issues. His thoughts are that my PSA was elevated due to high testosterone levels. Tomorrow I have a follow-up appointment with my HIV specialist where I will give her my status and get any recommendations from her on treatments.
August 24, 2017 I had a side issue which came up last Saturday. One of my molars under a $9,000 bridge started hurting. On Monday went to my dentist who recommended I go to an oral surgeon. That happened Wednesday when I had 3 root canals on the one tooth. Today having some minor pain in that area, probably being caused by trauma to the tooth. It's being handled with some Ibuprofen. Tomorrow I have a follow-up with my Colorectal Surgeon.
August 25, 2017 The appointment today with the colorectal surgeon went very well. He said I'm doing fine. So the next update will be next Wednesday after I see my chemo doctor again. Hopefully we will come up with a schedule then.
August 30, 2017 Had my appointment today. Tomorrow I go for a CAT scan which will be combined with the PET scan I had earlier. I am now scheduled to begin chemo and radiation treatments on September 11. Will fill in between now and then if anything changes or if I get any more interesting information.
August 31, 2017 Had a CAT scan this morning, mainly to make marks as to where the radiation treatment will be aimed at. 3 small pinpoint tattoos that will be used to center the machine so each treatment will aim at the exact same spot. I'm now setup for treatment starting on September 11. I will have about 6 weeks of daily radiation treatments (Monday through Friday) in conjunction with 2 weeks of chemo. Next update to this page will probaly be on the 11th of September.
September 11, 2017 Got my first radiation treatment this morning, then started chemo. I am wearing a body pack which contains a chemo pump. That will stay with me until this Friday when it will be removed. Will get another one on October 16 for the last week of treatment. Will have to go into the center every weekday from now until October 20 for radiation treatments. All the doctors, nurses and specialists have been very friendly, have answered all our questions and seem very competent. As of 3:00 this afternoon am doing fine but feeling just a bit strange from the chemo. Will update later today if anything changes, otherwise it will be a few days before I add another entry.
September 14, 2017 After another round of radiation, which really only takes about 5 minutes, I had a massage. Pleasant but not sure it really did anything helpful. Finally had an appointment with my oncology doctor. She took me off Zofran (ondansetron) one medication I was starting to take to ease nausea but it is apparently reacting to other meeds and causing numbness of the tongue and lips. If I really need something, I will try Ativan (lorazepam) and see how that goes. However, the amount of nausea I am having is very minimal. Finally she sent me over to the hospital to get an EKG just for safety, which on first glance looks good. Tomorrow I get the chemo taken off then my next radiation treatment before a rest over the weekend.
September 17, 2017 Nothing specific to report, just a quick update. I'm off the chemo for now and I think the side effects of nausea are diminishing. I continue on radiation treatments tomorrow.
September 23, 2017 Last Thursday, under advice of the doctor, I started eating some yogurt which is supposed to help with thrush. The success of that is still up for determination, but Friday afternoon I got a very strong case of something akin of diarrhea; however it wasn't liquid, rather soft stool. My system was desperately trying to evacuate to the point of convulsions. At this point (Saturday evening) I don't know if this is because of the yogurt, which I am not use to, or a symptom of the radiation treatment which tends to cause diarrhea in many people. The experience of Friday, which was repeated more violently today, has left me weak kneed and with what I believe is a mild case of shock. So for now I am stopping the yogurt until I can confer with the doctor on Monday. As of 10:00 pm Saturday, I'm stable.
September 29, 2017 I am a pain in the ass. No wait, that's not right. I have a pain in the ass, it's not Tom, and neither is it the fun kind. 🤠. The radiation treatments are beginning to make me quite sore, but I am now half way through the treatments.
Both Tom and I got food poisoning from some grapes last weekend. I recovered by Tuesday but Tom was much worse and we ended up taking him to the emergency room Thursday afternoon. He had become badly dehydrated. We are both recovering from that bout.
On the 21st of September I had a follow-up with the chemo doctor and I asked if they had done a T4 count test along with the other T lymphocyte tests. The answer was no so I asked for one. The results of a T4 test take several days. The T4 lymphocyte is the one affected by the AIDS virus. Before I began my chemo, my T4 count was at 754. Six days after I went off the chemo, my T4 count had dropped to 240. That's as low as I was at back around 2001. The standard range for T4 is between 425 - 1860, however if a helthy person is sick that number can easily reach 20,000. Due to the damage done to my immune system in the early days of my AIDS infection, the best my system can do now is 754, and it took my 20 years to reach that point. The doctor immediately put me on a couple of antibiotics for the next few weeks and ordered a T helper injection which I got today right after my radiation treatment. We shall see if it helps.
I am due for another T cell test this coming Tuesday. In the meantime, I'm starting to use some lidocaine to help relieve the soreness.
What is radiation therapy? Cancer radiation therapy is using high powered X-rays amed directly at the problem area. In some cases it is aimed at a cancerous tumor, in my case they are basically bathing my anus and the immediately surrounding area. X-rays are dangerous. They damage and destroy cells. Healthy cells in your body reproduce on a regular basis. Your body is constantly regenerating itself at the cellular level. To put it in very over simplified terms, a healthy cell will reproduce but knows to stop spreading when it encounters a different kind of cell of a neighboring part of the body. A cancerous cell doesn't know when to stop reproducing eventually creating a tumor. Left unchecked, a tumor will spread to other surrounding cells eventually killing the person. Where radiation comes in is it very slowly kills all the cells. If a cancer cell is killed, it can't grow back. Normal cells will grow back. So the goal is to kill off the cells slowly enough that the healthy cells can regrow before too much damage is done.
October 3, 2017 I was mistaken on the date. I had my blood test on Monday rather than Tuesday. Anyway, on the basic CBC tests, which do not include the T4, I'm recovering slowly. Most of the readings are back to normal except platelets which has recovered a bit. On September 28th, I was at 44, but have recovered to 67 as of yesterday. The normal range for platelets is between 140 to 400. Platelets are the part of the blood system that plugs holes in blood vessels such as when you cut yourself. Low platelets can cause one to bleed to death if a serious injury occurs. I also asked them to do an HIV viral load test to see how treatments are affecting my HIV status. We should get the results of both of these this coming Thursday when I see the chemo doctor again.
October 9, 2017 I got my chemo pump installed today for my second and final round of chemicals. It will come out on Friday. We had some problems with my blood tests from last week. The T4 test, taken on Monday, Oct. 2, failed because the sample was too small so they had to draw another sample last Thursday. That one came back today. When I started, back on September 11, My T4 count was 754. By October 2, it had dropped to 240. The test from October 6 came back at 311, so I did recover some. We will take another test this Thursday. See section 17 above for a description on T4 levels.
We also had some difficulty finding what happened to my HIV Viral load test from October 2. This is a test none of these people had ever had to do. Apparently I am their first advanced HIV patient. After much searching, they finally found the test on the computer but it didn't have any figures in the report. It took another 30 minutes before it was determined because this test involved HIV, Hippa wouldn't allow most of the people in the department to see the results. We finally got the results via the lab people who actually manage all the outgoing tests. My viral load is unmeasurable which means the number of virus particles is below the minimum the test can measure which is 10 parts per mL of blood. This is what we wanted to see as it indicates that despite my very low T4 count, my meds are still keeping the virus under control. One more worry point passed. Now we just need to see what this current round of chemo will do to the low T4 count.
I'm feeling rather funky now at 9:33 PM, having had the chemo pump placed this afternoon about 1:00 PM. A bit dizzy, slightly nauseous, and my brain thoughts are rushing, trying to go in 6 different directions all at once. I'm going to take, under the doctor's advice, a 10 mg Melatonin tablet before bed. Melatonin is a natural chemical produced by the body. Adding an additional dose can help one sleep better. I've tried it a few times since my procedure began and it does help, at least it works for me. I don't particularly like its induced sleep because I feel a bit weird the next morning, but it is better than not getting to sleep before 4:00 am like the last two nights.
Under advice of a good friend in Washington DC, and if I feel good enough tomorrow (Tuesday), I will add another update with photos showing how the Pump works and how it is attached.
October 11, 2017 Yesterday was kind of crazy so didn't get the update I was hoping for.
Here are some photos of the chemo pump and where it connects to the implanted port shown above in section 5. The yellow bit is an antibiotic pad which has a needle on the back which goes through my skin and into the port. The paper looking strip at the bottom is a piece of medical tape the nurse placed there to open up the lower edge of the transparent glue patch which covers the access. During my first treatment, three weeks ago, I got shower water under the patch which had to be replaced. By adding a piece of tape underneath the bottom edge of the cover it will allow any shower water to drain out rather than being stuck under the patch. I've now showered twice with this session with no problems.
About every 75 seconds, the pump shoots a very small amount of the medication through the emplaned port directly into one of the main arteries just above the heart. One of the problems with chemotherapy is some of the medicines tend to destroy the smaller blood vessels in the arm. By using the port, this bypasses the arm completely eliminating that issue. The actual amount injected in each instance is so small that a 400ml bag of medicine takes 5 days, 24 hours a day, to inject the entire bag.
Once finished with this 5 day regiment, the pump and the connecting needle going through my chest into the port will be removed. The embedded port will stay in place for about a month after treatment ends just in case it is needed again.
I have been going through x-ray radiation treatments on a daily bases (Monday through Friday) for a little under 4 weeks now. Only seven more days left. Here is a YouTube video I shot today of the radiation treatment. Click on the thumbnail.
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October 14, 2017 PAIN!!! Over the last few nights, I've only gotten about 2 to 3 hours of sleep each night. The radiation treatment causes a lot of gas and each time the gas comes out, it is accompanied with some mucus which is apparently full of bacteria and has to be washed off. Luckily we have a bidet which I have been using to clean up with. However, each time i have to wake up it takes me at least 30 minutes got get back to sleep.
The last two nights have been some of the most painful I have ever experienced. Today I spent almost all day in bed not moving. I can get into a specific position and as long as I don't have a gas attack, I can be relatively pain free with the meds I'm on. Another issue is I now have a number of radiation burns on my skin. If I have them on the outside, there must be quite a few inside.
I am particularly worried about my T4 count. We did a blood test Thursday and hopefully will get the results on Monday. We are about ready to call an end to this treatment. If I get the T4 counts on Monday, and discuss the radiation burns with the doctor, then we will make a final decision as to whether to quit or keep going.
October 17, 2017 I spent all weekend in bed. I was only able to get up to go to the bathroom and eat. Yesterday (Monday) we went to radiation department and told the Doctor I was finished. There is no way I would be able to get through another week.
For those interested in the technical aspects, my original schedule had me doing 30 radiation treatments for 5,400 cGy (this is the total amount of radiation received) Cutting the treatments off as of October 13 dropped that to 25 treatments for a total of 4,500 cGy.
My T4 count came back much lower than before, but not as bad as I had feared. I am scheduled for another test on Friday.
October 27, 2017 An overdue update. I originally titled this page "My battle with cancer". I'm now thinking I should have titled it "My battle with cancer treatment".
I've spent most of the last two weeks in bed. About the only time I got up was to eat and go to the bathroom. I did manage to kneal in front of the computer (I couldn't sit down) long enough to respond to critical emails about twice a day.
| T4 Count Absolute | |
|---|---|
| Date | Value |
| 03-08 | 754 |
| 08-23 | 754 |
| 09-02 | 240 |
| 09-21 | 266 |
| 10-09 | 311 |
| 10-16 | 186 |
| 10-24 | 161 |
Over the last couple of weeks, I have been having excruciating pain every time I tried to have a bowel movement or passed gas, of which I have had an enormous amount of since the radiation treatment started. Yesterday (Thursday) morning, after screaming on the toilet for a bit, I tried to walk into the dressing area just outside our bathroom, I started passing out. I went down on my knees and recovered somewhat. I ended up in the emergency room. I was badly dehydrated with very low blood pressure. They gave me an injection for the pain and a liter of saline. We spent over 6 hours at the hospital yesterday.
I have been treating the pain of the raw meat area around my anus with an ointment containing 5% lidocaine. Two days ago in the middle of the night I had skipped applying the lidocaine. The next day I realized my anus area had healed more than it had during the previous week. Last night I again decided to skip the ointment and today that portion of my bottom had healed much more. Apparently the ointment, while helping relieve pain, was actually retarding the healing process.
Today I went in for more blood work. Again I ended up getting an infusion of another liter of saline as well as a visit to the doctor. He suggested I go in to see my colorectal surgeon next week to look at the issue and see exactly what is going on. I also got the results of this past Monday's T4 test which has come back at 161, the lowest I have been since about 1997. We will do another test next Tuesday.
I'm beginning to be concerned about our IGRA rodeo convention coming up in a few weeks. There is a possibility I may not be able to make the 1,200 mile drive, which will be a major problem since I am supplying most of the electronic equipment to run the convention. We shall see how I get along during next week.
November 3, 2017 Where do I begin? On Thursday morning, we went in for routine blood work. While sitting in the lab, the tech couldn't get a draw through my port, again. I, of course, couldn't see my face but after a minute or two everybody started staring at me with worried looks. Apparently I was as white as a sheet and was beginning to get a bit dizzy. I was badly dehydrated. They wanted to send me to the infusion room (where chemo patients get their doses) to get some fluids in me, but they didn't have any open chairs, so I was taken over to the hospital emergency room.
I was admitted, but it took them over 2 hours to get to the point of giving me any fluids. After about 5 hours, I was eventually admitted as an in-patient, where I stayed overnight and all day today before being released about 6:00pm Friday.
I'm doing much better now, have my skin color back and the dizziness is gone. However, I am still very tired so am going to bed shortly.
Over the course of my treatments, I have lost approximately 50% of my beard and mustache, 75% of my side burns, 40% of my upper chest hair, 10% of my arm stomach and leg hair, and 90% of the hair around my groin and ass.
Chemotherapy works by attacking new cell growth. The portion of your hair which is exposed outside the skin is not living tissue. Growth occurs at the bottom of the hair follicle in the area of the Papilla. As new cells grow, the hair is pushed up and out of the skin. As the chemo retards new cellular growth of the hair, the dead portion of the hair eventually comes loose of the Papilla and falls out.
Once chemotherapy is ended, usually new cells begin to grow again and after a while the new hair begins to show itself above the skin.
November 5, 2017 Just a quick update. While I was in the hospital, one of the questions I was asked by a doctor which I couldn't answer was exactly what chemo drugs I had been given. There are usually two in any given therapy. Mine were Fluorouracil and Mitomycin. More information on each can be found by clicking the drug names above.
I am doing pretty good except for getting tired quickly. After all, I have spent most of the last month in bed and have only started moving around in the last few days. Tomorrow morning we start our trip to Little Rock for IGRA Convention. We will take 3 days to drive there so I have plenty of time to rest. Unless something unexpected occurs, the next update to this page may not come until we return on or about November 16.
For anyone interested, live webcasts of the convention can be found on the IGRA website.
December 7, 2017 I keep putting this update off because I really haven't felt like doing anything and have had a great deal of difficulty getting motivated.
The 2,000 mile trip to and from Little Rock in our F250 truck, took its tole on my system. I think the trip basically put my recovery back about three weeks. I spent most of the two weeks after returning home in bed.
The good news is I'm improving every day. I've had a few setbacks, such as food poisoning a few days ago but that is now over and I feel pretty good. I'm still having some difficulty with my anus which is still a bit sensitive. I suspect it will take another month to completely recover, and a bit longer to get all my hair back.
I got my port removed on Tuesday and the incision is healing and my hair and beard are beginning to grow back, although it will probably be a couple more months before it is back to my previous level.
Depression has also been a problem. After five months of fighting this with all the pain, I actually had a few incidences, while trying to have a bowel movement, where I was thinking it just wasn't worth living through. I managed to get through those and now most of the pain is gone.
Most of the depression has gone away in the last couple of days, but I'm still having a great deal of difficulty getting motivated to do anything except watch YouTube videos all day (my version of addition rather than watching TV soaps).
Maybe it's been a good thing I've delayed on this report. Just in the last couple of hours since I started this, I'm starting to get more motivation to do things. I filled my under sink soap dispenser, which I've been putting off for 3 weeks. I'm getting interested in finishing a telephone display in the garage which has been sitting there since before the chemo started. I think I will be able to continue on that project tomorrow morning.
So, apparently I'm getting much better fast now. I'll see if I can manage another update to this blog soon
January 9, 2018 I have continued to improve slowly. I'm now back to a normal daily routine but about every three days, after a bowel movement, which are still relatively painful, I have anywhere from one to two days of extreme amounts of gas with a small amount of the mucus that was discussed earlier. Essentially after a bowel movement, my insides feel like they are torn up, a bit like when one has diarrhea.
I think I still have at least a month of recovery before I should be back to normal. I hope I am back by the middle of February so I can get back to using my Steadicam for the Phoenix Rodeo. At least the beard and hair are coming back in. However, I don't think the hair around my crotch and ass will ever come back. I think this was damaged by the radiation treatments.
On a different subject, we have ordered me a 2018, Ford F150, King Ranch truck which should be arriving around the 3rd or 4th week in February. I'm excited and can't wait. This will be the first time I have gotten an new truck in 14 years.