It has been awhile since I last posted. It was the holidays and I was trying to relax. We actually got away for the holidays. I am definitely not the travelling man I use to be. We have to make sure we have plenty of time for me to rest during the day and if I do something that is physically exerting, I will probably be out for the rest of the night and extra tired the next day. It is the way of life for now.
Now onto why I named my post “post chemo hair”. Prior to chemo, my hair was very straight and flat against my head and very grey in the back. I commented to my wife that my hair looked like Mike Pence, the incoming Vice President of the US. Now my hair is extremely wavy and darker – at least less grey. It is so different, I find myself touching my hair subconsciously. It doesn’t feel like my hair. My wife says it is like touching another man’s head!
So I thought I would add a picture to show you what I mean…
I did read something about your hair coming in different after chemo but I didn’t pay too much attention to it. Well… I am living it. For now I am following the two UCLA doctors on my two other issues with the reactive hypoglycemia and my radiation enteritis issues with my small bowels. So I am just trudging along.
On Monday Marcy and I went to UCLA to see Dr Run YU, an Endocrinologist. They got my A1C blood test from Quest Diagnostics and it was normal. At least I don’t have any diabetes problems hanging over my head. We had some discussions with the doctor about my low drops in my blood glucose that seems to be happening out of the blue. In some cases, my glucose has dipped as low as 38. That is dangerously low and I feel like I am going into coma land when that happens. A few other times I am in the low 50s and it is a bad feeling. I can barely make it to the fridge and grab some juice and proteins to snap out of it. I have to get this problem fixed. The doctor discussed two possibilities of these hypoglycemic episodes: #1) benign tumors in the pancreas that is causing the issues; #2) reactive hypoglycemia from food intake that my body is not in sync digesting and therefore releases too much insulin.
So the plan is to deal with the easiest of the two possible issues which is number 2. He wants me to try some new breakfast bars that digest very slowly and helps to reduce the symptoms I am having. He recommended bars by Extended Nutrition. He also wants me to follow a hypoglycemic diet where I don’t eat carbs alone but with proteins that help level the blood sugar over the day. I am to do this for the next 90 days and if no issues, then we found the problem. If it does continue then we will search for the problem related to #1 above.
I just got the bars today and I am starting on them tomorrow. I also started changing my diet per his guidance. One thing he told me not to do is eat a bowl of ice cream! What the hell! I love ice cream. This will be tough. Wish me luck!
Yes it does seem like I keep getting hit with weird things during this prostate cancer treatment journey. Well I guess it makes my blog more interesting for you readers. 🙂
I have detailed my journey this year, probably too much detail at times, but it is to help me and update my friends and family. So for today’s post I thought I would add a couple of things related to the cost of my prostate cancer this year.
As you can see above, total claims submitted to BlueShield this year is $262,776.03. My responsibility of that is $8,859.90. That is through today. My total out of pocket is supposed to be $2,500 but there are items, such as the DNA test my Medical Oncologist ordered that is not covered. What would I have done without insurance? My total cost since my diagnosis is over $300,000.
Pills Taken This Year:
I also thought I would add a picture of all the pills I have had to take this year.
Those little flat things in the picture are the Neulasta auto injectors that they stuck on my stomach after each chemo treatment. Some of the pills are taken to counteract the other pills or shots I get. The boxes are Zofran, which is anti-nausea pills. I keep one in my pocket at all times. With the radiation damage I have to my small bowels, I still get the occasional nausea. The pills help.
Last week I visited my Medical Oncologist for my monthly visit. We did the blood draws and and flushed my chest port. After that we talked about my care. I told him that I have had success with the bowel program that Dr Weiss at UCLA put me on so that is a plus. One item that Marcy brought up was my blood glucose levels either crashing or going really high randomly. As an example she explained, on the weekend we walked the dog and I told her I wasn’t feeling well and we stopped the walk short. She went to do something and I went to the kitchen. By the time she walked in, I was sitting down with my head hanging down, my mouth slightly open and I couldn’t move my legs. She asked if I was alright. I told her no and to get the blood glucose monitor. She did the test and I was in the low 50s. She got some orange juice for me and I ate some ham. It was really weird and if she wasn’t there, I really don’t know what would have happened as I couldn’t really think or move. So that has happened to me a few times over the last couple of months. The doctor took my A1C measurement in June and stated that it was normal. So he recommended I go see an Endocrinologist. He recommended one in Ventura that he knows but she is a one doctor office and is booked for 2 months. Plus they had me on hold for 25 minutes before I had to hang up. I started thinking, how good of service and I going to get there? So instead I called UCLA for and appointment. They have availability next week. So I think it was a good call.
So who knows what lurks inside causing this issue. It is a little scary so I guess I got to get it checked out.
After my visit with Dr Weiss at UCLA, he put me on a program to help heal the radiation damage. If I don’t get any constipation build up, then the area can heal. I am keeping things running through with high doses of laxatives. I have to have many more restroom breaks but it is not diarrhea. I have not had any constipation or abdominal pain or back pain in two weeks so that is why I said things are better. I have to stay on this program for a few more weeks. After that I can see if I back off if the same problem occurs. If so, I need to keep on the program.
So readers, I am just staying the course with my monthly Lupron shots and daily casodex. I am staying on my part time work schedule because of the fatigue. And of course, I still have my shoulder to deal with after the new year. So that is the update. I have my monthly meeting with my Medical Oncologist tomorrow. Thanks for reading and take care.
I know it has been awhile since my last update. I have just been dealing with the side effect issues that I already discussed however a I may be on the road to getting to the bottom of this.
First, I had my monthly appointment at my Medical Oncologist office on November 1st. I had my normal chemo port flush and blood draws. Simple things to do now. I talked to the doctor and told him I was going to get a 2nd opinion at UCLA’s digestive diseases center. He thought that was a great idea and even knew the doctor I made the appointment with. Other than that, I got my Lupron shot and was on my way.
On November 9th I went to UCLA. I saw a Dr. Weiss who is a Gastrointerologists. I brought all of my MRIs, reports, etc. We discussed what has been going on and what my current GI doctor diagnosed me with. He thought that I may have the radiation interitis and that the section of the large bowel affected was not moving my stool through. But, he stated that will cause the next issue which he believed to be “overflow diarrhea”. He did not think I had bacterial overgrowth syndrome. The root cause of the overflow diarrhea is actually constipation. The stool stops and your body naturally absorbs the water from it. If it sits there too long, it hardens and you become constipated. It is probably doing this in the section that was damaged. So the hardened stool sits there and diarrhea builds up behind it. On occasion, the diarrhea comes past it with force. So not only do I get bloated, stomach pain, back pain, with the constipation, I also get diarrhea that I can’t control. Horrible cycle.
To test this theory, I told him I just had diarrhea that morning. He stated that if I just had normal diarrhea, there should be no stool in my bowels. So we took some xrays. He stated that we have to keep the stool moving so that section can heal. So today I got the xray results, sure enough, I had stool and gas in there. So the constipation was already building up again. So I am taking miralax twice a day and other stool softeners that he prescribed. It seems to be keeping things running. If I get any buildup, I have to take more.
So this isn’t the thing I want to be writing about or having you read about but I have to tell someone! At least I am not posting pictures!!
Anyway, other than all of this, I am continuing the fight.
So I went to see my Gastroenterologist. She told me that they didn’t see anything unusual on the MRI for my bowels. She diagnosed me with Radiation Enteritis and Bacterial Overgrowth Syndrome. That was a new term for me. She stated that she wants me to start a new antibiotic called Xifaxan. Apparently it is a fairly expensive antibiotic and will need approval from Blue Shield. She stated that it has very little side effects – sure. I haven’t had anything yet that doesn’t. But I will give it a try. I read up a little more of the Bacteria Overgrowth also called Small Intestine Bacterial Overgrowth (SIBO) and Small Bowel Bacterial Overgrowth Syndrome (SBBOS). So it seems that I got the Radiation Enteritis, and that lead to the Small Bowel Obstructions and Diarrhea. With months of diarrhea, it lead to the bacterial overgrowth. So one thing lead to another. Still, I was a little dismayed that she didn’t try to give me any other education while in the office or suggest some additional diet things to try and stop the overgrowth. I had to read it on my own and I am wondering if I am getting the care that I want. With that, I made an appointment at UCLA and their Division of Digestive Diseases. I feel like I am doing all the work on this. That appointment is on November 9th. I will update again after the antibiotic and the appointment.
Now the next issue… my left shoulder. So last year around April my shoulder was hurting as I tried to lift it and at night. So much so that I went to the ER one Saturday morning. That ER doc (at Kaiser), put me in a sling and referred me to an Orthopedic doctor. Well in that healthcare system, it takes two months to see an Ortho doc. So it was not until June when I went in. In that time, my shoulder slowly had less and less motion and lots of pain. When I finally got to see the Ortho doc, the first thing the doc says is they should have never put you in a sling, that just makes it freeze up more. Which is why he said I had Frozen Shoulder. He told me I may have some underlying issues, but that he couldn’t do anything except give me a shot and refer me to physical therapy. That seemed to help and then the PCa thing took over my life. Well in June I started to have shoulder pain again. I started to do exercises like I did before but that didn’t help. The pain actually is constant. So I made an appointment with an Ortho doc again. He told me it was not a frozen shoulder again and sent me to get an MRI.
Here is a picture of my MRI
Well I just got the report back and here is what it says:
1: Focal intrasubstance tear within the distal footplate of the anterior supraspinatus tendon involving 50-60% of the tendon thickness.
Just reading it makes my arm and shoulder hurt. So a damn tear… I understand that they typically want to do surgery for anything over a 50% tear. I have my follow up appointment with the Ortho doc on Monday. I will see what his game plan is. Then I have to pass that on to my Medical Oncologist to see if he is okay with that plan.
Last Tuesday, I went to my monthly Medical Oncologist appointment. Blood was drawn and the port in my chest was flushed. That needs to be done every 45 days. The doctor and I are both happy to see that my red and white blood cell counts are up to reasonable levels. Which means they are now just above the minimum levels. He is concerned about my continuing bowel issues. While there, he tried to call my Radiation Oncologist in Ventura to discuss them. Unfortunately he is on vacation. He stated he will also talk to my GI doctor to discuss. At this point, the only active cancer treatments I have going on is the hormone therapy. So with that, I got another 30 day Lupron shot in my hip.
As I mentioned before, Thursday I had my MRI done. Actually the proper term is MR Enterography (MR enterography is a special type of magnetic resonance imaging (MRI) performed with a contrast material to produce detailed images of the small intestine.) After I checked in, I had to drink 3 bottles of this liquid that makes my small intestines show up better on the MRI. I had one hour to drink all 3 which got a little rough with the last one. Unfortunately, I was still having diarrhea and had to go to the bathroom multiple times while waiting. I was wondering how I was going to lay in the machine for 45 minutes or so.
So I got through the MRI without running to the bathroom. The tech put an IV in my arm, which was a little tough in that I was dehydrated after 5 days of diarrhea. Too bad they couldn’t use my port. Half way through they added some additional contrast through that IV.
Below is the actual image from my MR enterography.
Looks crowded in there. Man I hope they find the issue. It is getting very tiring dealing with alternating bouts of constipation and diarrhea. I especially don’t want to go to the hospital again for a small bowel obstruction.
My follow up appointment is Thursday the 13th with my GI doctor. I will update again after that.
I know it has been awhile since I lasted posted. I have been dealing with the same bowel issues all month. Well actually I guess for the last five months. It really does suck. So I got the abdominal MRI approved by Blue Shield and I have that next Thursday. This should be the last of the three test so that my GI doc knows what is going on. I have this feeling, as I am sure some of us do when faced with this unknown, that nothing will be found and I will just suffer along until it fixes itself.
My next Medical Oncologist appointment is Tuesday. I will have my normal blood draws and my Lupron shot. I am back to monthly shots of that testosterone reducing shot.
On the bright side, I have a friend I made in my support group in West Lake Village. He is starting chemo and wants to buy my mitts and boots that I used during my chemo. I spent $400 on those so I am glad to sell them to another patient in need. I gave him a deal and sold them for $200. I hope to never need them again.
I will update after my MRI and followup appointment with my GI doc.
I went into the hospital and had the scheduled Upper GI with the small bowel follow through. They gave me that supper thick white barium shake. The doctor tells you to put some in your mouth and swallow when he tells me to. It is so thick, it is hard to swallow. The monitor shows my insides, kind of like on the movies where you see the stuff going down the esophagus and into the stomach. Interesting. After that he gave me a couple of more cups to swallow and then the tech told me to keep walking to help get it down and through the small intestines. After 20 minutes, she takes another x-ray. She states “wow, barely moved”. So more walking and 20 minutes later, another x-ray. It was just a little better. So then I kept walking and they decided to wait an hour for the next x-ray. That seemed to work. So it took about 3 hours to get the stuff all the way down. The tech stated that the barium could make you constipated so drink a lot. I thought, great that is one of the reasons I am here. Well it took 3 more days for all of that stuff to come out.
So after talking to my Medical Oncologist and the GI doctor, I have decided, with their advice, to stop chemo. Neither doctor thinks continuing chemo is a good thing until we figure out the bowel issues. So when I went to my medical oncologist’s office, I let him know my decision. He was happy with it. So the only think I had to do was have the I.V. of Zometa. The stuff that helps strengthen my bones during hormone treatments. I do feel better that there are no more chemo treatments… they are such a grind. My hair is growing back and I have better taste of food. So all is good. Well, not my bowels, but one thing at a time.
So a colonoscopy in two days. But don’t worry, I won’t post any pictures from that end.