Various Developments

A few developments have come about since with last spoke. A man named John A. who blogged and posted under a couple of forums when I was diagnosed recently passed away. I found him via David Emerson at "The Big C" which is a blog that this one is linked to. John was always a welcoming soul that helped newcomers like me at the time to keep things under perspective instead of freaking out without all the information that I needed. It is scary enough without having an idea of what you have really found yourself in the middle of. He also managed to keep himself very well informed on clinical trials, the efforts and results of others in their battle. He was a true warrior in this battle and one that will be greatly missed. His last gift was that he blogged the last several days of the rest of his life. So many blogs drop off as the time gets near and rightfully so, but he he gave a picture that so few have ever given of what happens at the end of a prostate cancer battler's life. It can be found at John A's Last Days at http://advancedprostatecancer.net/?p=3135 . I'm sure if you search further, you will find many other tributes to John and his wife. On my medical issues we have chosen to go with more of an supported care as opposed to straight Hospice. The biggest reason why is that if I need a Blood Transfusion, I may not be able to get it in a timely manner. The same goes for blocked Nephrostomy Tubes at my Kidneys. If those things can't happen when they need to because they have become treatment issues instead of quality of life issues, my quality of life could dwindle rapidly since my life could come to an end very quickly. It may not have become such a black and white issue, but the decision had to be made once on the transfusion and twice on the Nephrostomy Tubes. We were being told we may be pushing our luck a little. So I think this will help that situation. Doesn't change much else. Well, it's late and I'm tired so I will talk to you soon. All my best.
Brian.

Updated, a little newer post!

It's been a little while since I have updated on where things stand. First of all on the medical front, I have to second the opinions stressed on other blogs and forums that, before someone makes a headfirst assumption about Hospice based on just end of life stereotypes, that they are missing the most important and course changing aspect of the "treatment" end of this service. I know they are not supposed to count as treatment, but simply adding Predisone to reduce inflamation has allowed me to reduce pain meds, which has allowed less fatigue, which has increased appetite, which has increased energy, which has reduced constipation (somewhat). I feel like this is a list of all of the begats in the bible. But in a way it has given me a new quality of life. That is one, if not the biggest of Hospice's biggest goals. It has allowed us to look and react at med changes immediately to make the biggest impact. I still have no delusions where the end of this goes, but I am extremely grateful for the kind and skillfull care along the way.
The other part is that we have had to make some major remodeling to our basement to accommodate some help from my father and brother -in-law. My Dad and Brothers have attacked this project like they needed it for their own shelter. They are retired or work full time jobs or sometimes both and they have done a first rate job with, unfortunately, very little to no physical help from me. It will be a very comfortable pair of bedrooms with an additional full bathroom that will give Teresa the help from her Dad that she desperately needs right now with a very full schedule and a very important ally should something happen to me in this terminal illness. It does take some getting used to though. Helping plan out a major remodeling project of your home that you won't get to see a lot of. I fully expect to see the completion and to see this project in place for quite awhile. Don't get me wrong, I'm not marking the finish of my basement as a major lifetime milestone, but it is planning areas for somone else to live in, probably long after your gone. Kind of makes you wonder, from a fairness standpoint, how many shots to call on the long term parts of it. But as long as I'm alive, I will continue to live as if I will until I'm called home, whether that be 6 months or 40 years. So your stuck with me until then. :)

Hospital Visit

Monday night I awoke to a sharp pain in my pelvis and abdomen, along with a great amount of pressure. I discovered that the nephrostomy tubes had clogged from infection and the urine was again backing into my left kidney, my only working one. After trying to stretch a little to do anything to dislodge the clog we had to call our hospice nurse. She was great, but could not get it free either. So at 9:00 am, I was on my way via ambulance to the hospital. They ended up replacing the tubes all the way back into both kidneys. The left one began to function right away. I stayed for observation Tuesday night and headed home on Wednesday. All in all, it went very professionally, but I'm glad to be back home again. My best to all of you today along with thoughts on a wonderful upcoming spring!!

Birthday Party

I celebrated my 42nd birthday on Saturday with my family with a wonderful party at my house. My sister and all of my brothers were able to be there as well as my parents and their spouses. There were also so many more family and friends that were in my mind and heart as they had expressed their wishes and thoughts. I had a blood transfusion on Friday, so I wasn't sure how the energy would hold up, but other than a short little nap towards the end of the party, I was able to participate and have some fun with everyone. The pain in my hip, abdomen, back, etc had been getting a little worse lately so we talked to the doctor and the nurse at the transfusion to determine options. The doctor informed us that there are no more treatment options. The clinical trial for the bones requires you to be off of all other hormone blockers and any other treatments besides pain meds. My bone pain is not the issue. I have bone pain, but it is managed by the medications. My main issues are the tumor growth working it's way into the colon and bowel. If it causes a perforation, I would become septic and the results are dire. I also have enlarged lymph nodes that have cut off urine drainage and have to rely on bypass tubes and bags to clear the fluids from my kidneys or I will be in acute renal failure. I also take twice daily injections to clear a blood clot from my upper left leg so it doesn't break loose and cause severe damage in the lung, heart, or brain. The bladder, prostate, and other soft tissue problems persist without any let up as well. I don't list these things for sympathy or excuse but to explain. The doctor cites these reasons as his reasons to refer me to hospice. Hospice is care for those that have no further treatment options, but need dedicated care to handle pain management and the side effects of those drugs. It means that my care will mostly come to my house instead of me traveling to the doctor so much. My pain meds can be changed instantly instead of waiting for the next appointment. There is so much to look at that makes sense with this care and know that I will likely have the best quality of life and the most comfort with this plan. It also means that I am not surviving this disease. It means that my time is likely winding down and I need to place all emphasis on enjoying that time with my family and friends. I don't accept a timeline and one was not given. But I do know what this means. It was simple to see it in the nurse's eyes as she gave us the rundown on what is next. What is next is that we will meet with the Hospice people this week and then likely get started. I look forward to the pain relief, but the term Hospice and what it inspires scares me a little. I had a good talk with my Dad about this and he reminded me that this is what my faith has been building me towards. Now is the time to draw from that well and know that Heavenly Father has an infinite supply of care and love for my family and me. I know He will be enough. I pray that I can be.
B.

Looking for blood in all the wrong places...

Well, unfortunately I am still leaking. The good side is that it is only when I attempt a BM. All of the muscles tense and we assume puts undue pressure on the bladder where the cancer has intruded through the bladder wall. The blood that has already leaked, pooled and clotted, in addition to new blood being pushed out is forced out from my bladder in the most conventional of ways. However, I have gotten very used to what fluids come from where, and how it feels when they are ejected. At almost 42 years old, these are new and unpleasant sensations. As of right now, my hemoglobin still sits at 10.2, so the blood loss is not consequential and my body and occasional transfusion make up the difference. The other option is to knock me out and using a catherter, go to the bladder the very unpleasant way and cauterize the bleeder. Could help, but could make it worse. The plan for know is to maintain what we have unless the bleeding gets to be so much that the transfusion and body production can't keep up, then we would have no choice. The other thing is that if the bleeding seems particularly heavy, I could skip one of my twice daily Lovenox blood thinning shots to help it heal a little faster before more pressure aggravates it again. All for now. Blood work in 2 weeks, see the doctor in 4. Will update if anything interesting is happening..
My best to all!!
Love ya!
B.

Had to visit the emergency room again Sunday night. I started passing a fair amount of blood and clots through my bladder. Since 99% of the urine drains into the nephrostomy bags, this caught us off guard a little. We called the on-call doctor and she advised, with my low blood counts and the fact we did not know where the blood was coming from, that we had better get it looked at. After our visit with the Urologist today, we are going to see if begins to let up or gets worse. Today was better with the blood, so hopefully this was something that began to bleed from the Lovenox and drained to the bladder. So we will stay the course for now and hope that it continues to lessen and stop.
B.

Yea Kidneys!!

Nothing that exciting about my kidneys this month, just trying to give them a little encouragement. The hemoglobin dropped a little this week and I will have to have it tested next week again. It dropped from 10.0 to 9.4. If it gets back down into the 8's, then I will have to borrow some more blood. This will likely settle down into a quasi-scheduled activity. It is an amazingly different energy level from the 9's to the 8's, and especially the 7's where I found myself a few weeks ago. The creatinine that monitors kidney function is holding very steady at 1.0, which is a normal reading, and exceptional considering my right kidney is non-functioning and very likely to remain so. The big battle that wages in the back of my mind tends to be the potential for bloodclots. I have been injecting Lovenox for the last 6-7 weeks. It is a twice a day injection in your stomach and will need to happen for at least 4-6 months. It is a small needle, so it is more of a nusiance, like a small bee sting, but it does get old pretty quick. I will go back on Wednesday to the doctors who implanted the bypass (nephrostomy) tubes from both kidneys. I have a tube coming out of my back at each kidney. The tubes each drain to a bag. That is how I have to urinate now. Since we can't shrink the lymph nodes at this point, removing these tubes could lead me to a repeat of my weeklong hospital stay in December of last year. So, while I wish they could install stents and make this an internal deal, it is not likely to happen. Not now, and most likely, not ever. Other than that, things are going pretty well here. I am still writing for the kids, and trying to take one thing at a time, one day at a time. I wish all of you my very best!
B.

There isn't much to report lately. My hemoglobin has been maintaining betweeen 9-10, which for most people would be low, but I seem to do okay with. I don't have a ton of energy, but enough to do the things that I need to. I still get tired in the evening and I need the extra sleep. But at least I am up when I want to and need to. The kidney seems to be operating fine. I will go back in to have the Nephrostomy tubes looked at in early Feb to see what the long term solution for drainage will be. The retaining of the fluid from extreme swelling of lymph nodes is what caused that part of the problem, so unless we know that the swelling has decreased drastically, which we don't right now, then we need a backup plan to make sure that I don't retain fluid and end up back in the hospital. Other than that, things are pretty quiet right now and I like it that way.
B.

I vant your blood!!!

This week all seemed to be going pretty well except for some strong fatigue on Monday and Tuesday. I was in anyway for blood work so they checked kidney function and hemoglobin to see if I was still anemic for some reason. The kidney function looked great. Better than it had since before the hospitilization before Christmas. The hemoglobin, however, for some unknown reason dropped to 7.1. I definitely noticed a drain in energy. They decided to give me 1 unit on Tuesday and one on Wednesday. I started to feel a little better after the first one, and a lot better after the second one. Hopefully, we can get my body to make the adequate number of red blood cells and get away from the transfusions, but at least I have a good option if I need it. It is a great reminder to me, even though I can't donate now, please help to keep these blood banks full. It is a great way to help your fellow man, even if you don't know who it might be. It is used for so many emergent and non-emergent situations, but it truly saves lives. If you see a blood drive, and it's been awhile, and you have a couple extra minutes, picture someone you know or love that might depend on this type of gift and give a little bit of yourself.
All my love and thanks!!
Brian.