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.
Today I finished the radiation treatments to my chest to prevent gynecomastia. Yes, it sucks that I have to do this, but the last thing that Marcy and I want is me needing to wear a “manzere”. Luckily for me, I had the radiation therapy before any growth could occur. It ended up being 3 treatments to each side of 8 grays of radiation. All of the literature says it is safe with no real side effects except some tenderness and maybe some itching/pealing for a few weeks. This is supposed to be anywhere from 50% to 70% effective.
On the first day, when they do the calculations they take measurements and draw these circles on my chest. Of course they used a pen that took days to wash off!
I also had the radiation tech take a picture while I was on the big machine. The green lines are laser lights they use to line up the machine.
Bowel Issues Update:
I went to the GI doctor this week also. She was great. She listened and discussed possible issues. Her initial thought is I have what is called “spill over diarrhea”. Weird term but what is really means is that I have constipation and some blockage and the pressure behind comes out in the form of diarrhea. I don’t care what it is called, it has just been a horrible cycle of diarrhea and constipation, not to mention that terrible bowel blockage with the stay in the hospital. She does believe that this may have been caused by the external beam radiation I had early on since that is when all this started. so the plan is a few test to see what is going on inside. The first test is an Upper GI with Air & Small Bowel Follow Through. What does that mean? They will make me drink a barium shake and lay on an x-ray machine while the stuff makes its way through my stomach, through my small bowels and finally into my large bowel. The x-ray machine takes constant pictures so that it looks like a movie of the liquid making its way through. Sometime they have you turn or they push on your bowels to get the stuff to go through. It is estimated to take 2 hours. That is a long time to lay on an x-ray machine.
The next test will be a colonoscopy the following week. Finally, if she doesn’t see anything on those two test, she is going to do a “small slice” CT scan of my small bowels. That will help her see if there is any sections that have inflammation.
I am looking forward to getting all these tests done to figure things out.
I do have chemo treatment number 4 this week. In addition to that, there is an annual convention for prostate cancer in Los Angeles next weekend that we plan to attend. So this is going to be a busy week. Wish me luck.
On my last visit with my Medical Oncologist, I discussed a new issue I am having with sensitivity with my chest and nipple areas. It is known that one of the side effects of taking the hormone Casodex is a possibility of gynecomastia. More detailed on it is here (gynecomastia). So the fix for this is either taking a pill 3 times a week or radiation. I can’t take the pills as my Medical Oncologist stated that it will mess with my stomach. I can’t add any other problems to my digestive track. So radiation is what I need to do. I don’t have breast tissue growing yet, but I don’t want it to start as it doesn’t go away. Basically when all your testosterone is gone, the little bit of estrogen I have in my body is free to take over. Therefore it activates tissue in my chest. Another side effect. It is ironic, the actually cancer doesn’t hurt, but all the treatments do. It is all about managing the side effects. So this week, starting on August 29th, I go back to the radiation oncologist. They will give me 6 grays of radiation to each chest. I do this Monday, Wednesday and Friday. Then it is done. I got to do what I got to do!
I had my last chemo shot on Wednesday, September 17th. I am updating this now because I am just getting over the bad “chemo crash” days. Damn Nuelasta gives me some awful bone pain. I know I am not a 100% because I just walked upstairs and I am exhausted. It takes about a week and half before you are really back to normal. Although the exhaustion, and for some reason weak legs, stay with you. The weak leg thing is weird. Just seems when I stand my up thighs feel like rubber. Marcy and I are both hoping that no weird thing happens again that puts me in the ER. That would suck. So far, temperature is okay.
My medical oncologist told me he was worried about the bowel obstruction. He told me I should stop chemo. Of course, I was against it as he can’t say for sure that the chemo contributed to that occurrence. Also, I just want to get through the minimum of four cycles at least. If I stop chemo and the cancer comes back, then all of this will be for nothing. I can’t do that. We negotiated that I would have a little lower dose for this chemo round. I was okay with that. I like the relationship I have with my medical oncologist because we discuss the treatments, he doesn’t just decide and tell me what is going to happen. That is why they are some of the best doctors out there for prostate cancer.
One other benefit of the chemo is what else it finds on me besides the prostate cancer. Look at the picture below. It is my left forearm. A couple of years ago I had to do an external chemo mask on my face. It was a rough experience as I had to put this stuff that burned layers off my face and neck. Well the dermatologist at the time told me I may have to do my arms to but we didn’t at the time. Well it looks like I did have some deep precancerous spots and the new chemo has found them. Just like my face, they start as red spots and them get deeper red and then turn into little scabs. The chemo kills them and my body rejects them at the surface. Those spots could turn into skin cancer later in life so I am glad I am getting this secondary benefit.
Last week, I had a bad week. It started on Sunday the 7th. I just didn’t feel right. I was getting bloated and had some cramps. I am thinking the chemo is throwing off my beneficial bacteria in my stomach so I added some probiotics to my diet. On Monday and Tuesday I didn’t feel any better. I was just getting more bloated and had strong stomach and lower bowel cramps. I knew I was getting clogged up and had constipation. I started drinking Miralax. By Wednesday afternoon nothing was working. Pain was increasing so I did an enema. Nothing came out. That wasn’t a good sign. I told my wife I was going to the ER by Thursday morning if I was still clogged up. Wednesday night I was in bad shape. I couldn’t sleep and just lying there I was in pain. Every time I turned from my back to my side it hurt. My stomach was so distended I couldn’t believe it.
I got up Thursday morning and took the dog to the pet hotel before heading to the hospital and to check into the ER. I was in bad shape. No bowel movements since Saturday the 6th. They gave me some Dilaudid for pain. They did a CT scan and hooked me up on an IV. The ER doc said I look like I have a Small Bowel Obstruction (SBO) and he was having another doctor come in who would probably admit me. That doctor came in and repeated that I had an SBO according to what he could see on the CT scan. He said that the normal process to treat this is to insert a nasogastric tube through your nose and into your stomach to suck out air and fluid and relieve abdominal swelling. The tube would stay in until no more material comes out. I asked how long will that take and he stated if I am lucky, by the next day. If I was not lucky, it could take 3 to 10 days! What the hell…. That didn’t sound good. He stated that the machine is set to a low suction and it pulls out everything through the stomach and from the intestines on the blockage side. This helps relieve the pressure on the blockage and hopefully the intestines fixes itself. He stated that it works 50% of the time. If it doesn’t work, then surgery would be the next option.
Damn… another stay in the hospital.
So a couple of nurses come in to insert the tube. It is not a nice process. The tube seems fairly large and they put it in your nostril and push it down while you drink a little bit of water. Then after it goes past the gag reflex, they have you lean your head forward and keep pushing. This prevents the tube from going in your lungs. They give you a barf bag because you will gag. Well I have had a previous surgery (fundoplication surgery) that wrapped my upper stomach (fundus) around my esophagus. So it is tight to prevent stomach acid from coming up. Well this tube is quickly pushed past the lower esophageal sphincter and it hurts. They wheel me upstairs to my room. When I got to my room I noticed my nose was bleeding, an indication of the force of the tube going in.
The floor nurses came in to give me some anti nausea and antacid meds through my IV. They hooked the machine up and it started the light suction process. Really weird watching this brown liquid come out my nose and into the machine. It is a very slow process. It is hard to swallow and even with pain meds, I feel the damn tube in my esophagus.
So it was a really really long night. I had the pain meds every two hours. I had the anti-nausea every 4 hours. They also came in to inject heparin into my stomach a couple of times. That is to prevent blood clots. I couldn’t lay back as that was more painful. I threw up a couple of times and it was brutal. Damn.
Well by 5am the next morning nothing was coming out anymore. My stomach wasn’t bloated. It seemed I would be the lucky one that could get out sooner than later! Well I had to wait until the doctor came in. Around 10:30 the nurse told me he was on the floor. Great! Get this tube out. Well I sat there with pain in my throat, especially in my esophagus, and hunger pains in my stomach. I had not eaten since Wednesday and it was Friday. Not a drink of water, nothing. I asked them not to give me the pain meds after 6am because I didn’t want to get constipation from it later when I could eat. However the pain kept building and it was tough to wait. Well the doc didn’t come in my room until 1PM, but only after I told the nurse to go find him as I was in a lot of pain and I wanted the damn tube out. (I am normally a good patient and easy going – I was not in a good mood as you can imagine and was a little more forceful in my tone). The doc came in and said my latest x-rays looked good. He wanted me to drink some fluids and have jello and if no issues, the tube could come out. I said No Way! I can’t drink or eat with the tube and it is giving me pain. I reminded him of my previous surgery and my tight esophagus and no water or jello was going down. I said I want the tube out! He said okay Mr. Ray we will take it out. He wanted me to have the water or juice and jello and if that was okay, have soft food for dinner. If no issues, then I could go home. If not okay, he said the tube would need to go back in (right – that wasn’t going to happen!)
Everything was okay after drinking and eating and I asked for mashed potatoes for dinner. I had a little bit and told the nurse I feel great and can I go home! I guess they just wanted me to pass gas to get out. Luckily that started to happen and it was my ticket to freedom. She said okay. I was free!
Luckily, I have been okay at home and I have had some bowel movements. I am eating fairly lightly and with soft foods. I can tell you I am afraid of it happening again. It seems that this maybe a side effect of the radiation. I have an appointment with my radiation oncologist next week. I have chemo #3 on Wednesday the 17th so I hope I have no issues while I go through my chemo crash days on the weekend.
Another treatment in the bag. We got there earlier then last week which was nice. We started at 9:00 AM. I had all the pre-chemo medicine and then the ice bags went on my hands and feet and chemo drip started. We met a great couple, Kathy and Rick. Rick is stage 4 and having a round of the latest chemo out there for castrate resistant cancer (meaning other chemo stopped working). Always good to meet another battle brother going though his journey. We wish them well.
I am on steroids right now so I feel good but I know that will wear off probably starting on Friday. The weekend will suck as my chemo crash will happen. I have the Nuelasta shot on again and that will aggravate my joints and bone. If that is all that happens, then I am good. I do not want to go to the ER/Hospital again. My white blood cell counts are much higher so I should be in good shape.
Lastly, I had shaved my head to a one blade last Saturday but yesterday all of the remaining short hairs started falling out (all over the shower and pillow). So today I used the beard trimmer without the #1 comb and shaved the rest. So now I have my breaking bad look going on!
Well it was bound to happen… On Saturday morning I took the dog outside and had a seat in the sun. My scalp was sensitive and I ran my hand through my hair. A ton of hair came out in my hand and was falling in front of my face. It was as if I was getting my haircut. My hair was not coming out at the roots but breaking off and falling out. Luckily my son was coming over so he cut my hair with a #1 comb and it is very short. If it starts coming out some more, I will probably have to shave my head. I have a nice collection of hats to wear for the next 4 to 5 months. My next chemo treatment is on Wednesday.
After my chemo treatment on Wednesday everything was going well until Saturday. I woke up hurting everywhere, which is normal for this treatment. It is called the chemo crash. So I laid around most of the day. Around 4pm I started taking my temperature. The first read was elevated at 99.5. That wasn’t good. I re-read the sheet from the doctor which said to call if my temp gets up to 100.4. I started pounding down more water and pedia lite. As time went on, nothing helped and by 9:20pm my temp was at 102. We called the doctors office. He told Marcy to get me to the ER.
Apparently the concern is that my immune system is compromised and an infection can be fatal. I checked in to the ER. They started all kinds of tests and told me I have to stay and start a series of antibiotics to be on the safe side. They also took some cultures that take 48 hours that I have to wait for. So here I sit, on Monday with an IV and about my 10th bag of antibiotics. It is boring, and it sucks, but I have to err on the side of caution.