May 24, 2012

Now what? You have got to be joking.

So just when we were ready to resume a somewhat normal, quiet couple of weeks with no events, visitors, or major plans, things took an unexpected turn last Tuesday at 1:00am, when I began to experience increasingly and severe pain in my mid to lower back and both thighs. It reached the point that Mary had to call the hot line for the Oncologist in the middle of the night. I ended up checking in to the hospital and connected to a morphine pump to deal with the pain. By 4:00am I was able to sleep so I told Mary to go home and get some sleep herself.

I was already scheduled for a bladder scope on Wednesday (the 16th) to see if they could determine why I was continuing to experience blood in my urine, and perhaps if the bladder was the source. While performing the bladder scope they cauterized a few smaller, older lesions on my bladder and completed an additional procedure that took  pressure off my urethra that was being caused by my prostate. During our consultation with the surgeon, Mary asked if they could also replace the stents during the procedure, to give us an additonal three months before they have to be replaced. (I have had them for one month). They said if it did not cause too much bleeding, they would do it, and they did. Wednesday morning was filled with test after test (vitals, blood wor,k etc) and more discussions with Oncologists, Urologists, residents, nurses and more. What little sleep I had gotten was interrupted and short intervals. Though the back pain and leg pain had gone down considerably over night, I was weak from the general anesthesia and unable to have an MRI, as I could not lay flat on a table for 45 minutes to an hour. Even with the morphine, the pain was too intense to lay flat. The doctor had ordered an MRI to try to determine the root cause of the increased bone pain. We tried again on Thursday morning but the results were the same as before, too much pain. What made matters worse was Thursday morning they gave me a steroid (Dexamathasone) hoping this would help alleviate the pain. All it did was make me unable to sleep Thursday night. I would guess in total I may have gotten two hours of sleep Thursday night. I did doze off every few minutes during the day, as Mary sat at my bedside. Apparently, the combination of the anesthesia and the morphine made me very lethargic.

By Friday we threw in the towel and the doctor proposed that we have a CT scan to attempt to find the source of the pain in my back. Then, if there was an area they needed a closer look at, then we could try an MRI on a smaller area that would not require so much time on the table. The CT scan showed some increased activity in my lower spine but no consolidated area in the vertebrae that warranted radiation as an option to relieve the pain. The plan by Friday afternoon was to insure any remnants from the surgery were healing and then to go forward with pain medication to manage the pain.  My PSA has been steadily decreasing since I started the Zytiga. It was at 2,770 mid April, and Monday was at 1300.  Obviously, still way too high, but moving in the right direction. What gives us hope is that we will continue to see a response from the Zytiga, consequently some shrinkage in the cancerous tumors and then less pain and then less pain medicine! That is our hope.

The next challenge was to transition me from morphine to oxycotin. They increased the dose of oxcotin and started to reduce the morphine. The doctors monitored this closely, as we did not want to go home and then have a relapse of severe pain. By late afternoon on Sunday Mary was driving me home and I felt like I couldn't get there fast enough. It is so good to be home!

Over the last three days, my sleep is getting better. I am trying to limit the amount of pain meds I need for the break through pain. I am taking extended release oxycotin around the clock. I continue to have edema, so I have to keep my legs elevated a good part of the day, but feel a little stronger each day. Mary and I even went for a short walk around the block on Tuesday. There is a lot that lies ahead of us, but for now, we are focusing on recuperation and taking it one day at a time.


LeftTenant said...

Crikey! I was hoping it stayed away from your spinal cord. You're one of the toughest sons of guns I know, David. Thx for enduring and hanging onto the adventure of it all. Samarium for pain?

Anonymous said...

David, Sounds like you've had another bump in the road (more like a big boulder) but I'm glad you're home and doing better. It's wonderful that the Zytiga is working. My husband hasn't tried it yet because at the time it wasn't approved by our insurance unless he had chemo first. He has been on chemo for 8 months and it is working so I'm greatful for that. There are clinical trials for nanotechnology to deliver the chemo so it attacks mostly just cancer cells and not healthy ones which makes side effects more tolerable. I need to research more on that... It is so encouraging to know more research and clinical trials are being done.
I think a cure or at least a way to keep it under control with new methods will be discovered. Hang in there!!

Anonymous said...

What bummer! Great news on your Zytiga response - I hope it kicks your C cells to death. You are not to far from Sartor to get Alpharadin - safer and more effective long term than samarium. Lud

Sherry Luttrell said...

Hi David,
we understand your pain and circumstances as they are somewhat similar to Terence's. I am happy to hear that you are responding to Zytiga- that's very good news.

Are you able to get manual lymphatic massage? That is working wonders for Terence- after long months of debilitating edema (literally) we are finding that the MLM is working wonderfully.

You are continually in our prayers David, as well as Mary and your son.


Anonymous said...

Glad to hear you are home and hope your recuperation goes very well after this ordeal. Nice PSA drop with the Zytiga. You are one tough cookie and an inspiration to many of us with a loved one battling advanced PC.


Anonymous said...

Hang in there David. You are a true inspiration. God has a plan for you and I believe you are fulfilling it through your blog, your charity and your educational efforts. I went to a local Jesuit high school, Rockhurst and they taught us to be a "man for others". I know you did not go to Rockhurst but you are the real example of a "man for others". God bless you and yours. You and your family continue to be in our prayers.

Wilson Family said...

Hi there. This is Brian Wilson's wife. I don't know how to post on his prostate cancer blogspot to let people know about Brian. He passed away on May 12th. It was a peaceful transition into heaven. He was able to handle most of this battle. Things got really rough for him over his last month of life but he didn't complain. The last two weeks were very difficult. He wasn't able to get out of bed on his own and the drugs were so high that he didn't know why he couldn't get out of bed. He thought he had been shot. He didn't know he had cancer at the very end. He was an absolute joy to take care of until he took his very last breath. He was and will always be my hero.

Wilson Family said...

Hello there. I posted this on Brian's comment section of his blog page because I don't know how to post and update everyone on what happened. I thought I would copy and paste this to you as well. My prayers are with you and your family.

This is Brian's wife, Teresa. I don't know how to post on this site so I am just going to try to leave a message in the comment section. Brian passed away on May 12th 2012. I want to write about it on his blog spot but I don't know how. He was such a good man. The viewing and funeral were packed full of people. This is because Brian was so loved and respected. This battle was so difficult. It felt like more than we could take. I think a lot of you are fighting this battle too. You will get through it. You will come out of it a better person. The pain of having to leave this life and the fear of the unknown on how that will happen and how long we have left is so difficult to endure. I can say that even though things were very rough, life was beautiful and good up until the very end. 3 or 4 weeks before he died was very tough and scary because of what was happening with his body. If I were in his situation I don't know that I would have continued the blood transfusions and changing out the kidney tubes for as long as we did. His body just had to keep figuring out different ways to die. That is the only way Brian would have it though. He fought until the bitter end. He is a beautiful soul and I can't believe he is really gone. He died very peacefully. He slipped into a coma sometime during the night of the 11th and then simply stopped breathing the morning of the 12th. We were there with him and it was peaceful. May God Bless You if you are enduring this difficult battle as well. My love and prayers are with you all. --Teresa Wilson

Anonymous said...

My thoughts and prayers are with you as you fight through this deadly disease.

Anonymous said...

Hi,David.Two times in a week my hushband had a look into your site.He was verry intrested in your medical file.For him the only goal was to have the Arbiraterone,after 7 sessions it was not possible to have number 8.His oncoloog promissed him to give him the medicine on 12 June.He died on 31 May ( my birthday) with realy sevier pain on his Hernia where everything started 4 years ago.Please don't stop your battle against prostaat cancer.I still watch your site,and hope to do that for a long time.Your special friends from Holland,Andrè and Wil Hoppe.sorry for my bad English.