First I'd like to say that without friends and family as a support group I wouldn't be telling my story now. I wouldn't be able to say I'm a 6 year survivor.
It all started on July 1, 2002, a routine yearly physical. The next day the my family doctor called. I was vacationing at a cabin in northern Wisconsin. I called my answering at home and there was the message to call my family doctor immediately. When I called him he said everything was okay except my PSA was a little high. This was my first PSA ever. I asked how high, he said 46. I said don't you mean 4.6 which could be considered a little high. No, he said 46, then I freaked out and told him that's more than a lot HIGH! The following week he scheduled me to see a urologist. The urologist gave me a DRE (Digital Rectal Examination). After he was finished I asked him if he was a betting man, do I have cancer? He said to me, bet the rocky farm you have it. A couple of days later I had the biopsies. Boy that didn't feel good! All 12 cores came back positive for cancer.
A few days later I was given to another urologist/oncologist. I found out later he takes all the so called bad cases. When I met with before he even started to say anything about my condition or possible treatment options, I asked if I had terminal cancer. He said we don't say that anymore. Okay, I said what do you call it? He said non-curable cancer. I said, is that what I have and he said yes. I read a lot about prostate cancer before I met with him and I decided I wanted it OUT OF ME! I was immediately put on Lupron (4 month injections) and Casodex (50mg daily). I was on these medications until December 3, 2002, my surgery day.
Then all the FUN started for me! Without a sense of humor I don't know if I could tolerate everything that was about to happen to me. I woke up in my hospital bed after surgery and all my family was there. I found out later it wasn't a smooth RP. I lost 2.5 Liters of blood, my rectum was cut open and sutured and I needed 42 units of blood during the surgery. They found that the cancer was in my lymph nodes and seminal vesicles. During my next nine days in the hospital I needed two more blood transfusions and a gastro intestinal tube put in because I was vomiting so very violently.
Three weeks later I was in the urologists office getting my catheter and JP drain pouch removed. Two days later I was going to the bathroom and urine was coming out my rectum and fecal matter out my penis! I flipped out! I called my urologist and he said to come in immediately. My son had to drive me. He told me I needed to see another surgeon to have a colostomy put in to let that area heal. I didn't even know what a colostomy was. I was soon to find out!
On January 17, 2003, a colostomy was put in. I didn't know they had to open me up just like the RP. Boy, that didn't feel good! Nor did I know what else was to happen. Just working with those bags was a real pain in the side!! HA!HA! On April 23, 2003, I had the colostomy takedown. They opened me up again in the same spot to do this! Now this is three times in less than 5 months! May 5, 2003 the staples were taken out and I got an open wound infection. Now I had a hole in my abdominal area the size of a tennis ball and about 1.25 inches deep! I had to pack that wound every day thru the end of July until it healed. Thank God for pain medication!
I know this story is long, but I just had to get this off my chest. I'm far from done, please bear with me.
Not long after this it started up again! Urine out my rectum, air going into my bladder, and fecal matter out my penis. Now I was sent to see a colon-rectal surgeon. I was diagnosed with a rectal urethral fistula. Great! On January 8, 2004 I had surgery again. It was called a endo rectal advancement flap with an ileostomy being put in. Boy, another bag to deal with. I was opened up again in the same spot. This is number 4 now. Everything was going good so I decided in February to go ice fishing in Canada. On the way up there we stopped at a gas station I had to go to the bathroom. I was standing at the urinal and all of a sudden air was coming out my penis and urine out my rectum. I was devastated! I got thru the trip but it wasn't that much fun. I talked to both the urologist and the colon-rectal surgeon. They said this couldn't be. I should just keep an eye on this and see what happens. This keeping an eye on the situation went on until July, 2004. Finally, back in the hospital on July 13, 2004 to have supra pubic catheter put in. Now, I'm peeing in one bag and pooping in another bag. WOW!, Unbelievable! On July 24, 2004 I got a severe bladder infection, two days in the hospital. September 1, 2004, another severe bladder infection, one day in the hospital. It was decided to take out my supra pubic catheter. September 15, 2004 it was taken out. The most excruciating pain I have ever had was that day. It had calcified. I must mention all this time I was getting Lupron shots every 4 months. All the nasty side effects of this drug I got.
It was finally determined everything was healed by all tests I went thru. So on November 2, 2004 I had the ileostomy takedown. Opened up again!! This is number 5. I'm really beginning to like this, NOT. I wasn't rebounding very good from this last surgery. I has CT scans to see what was going on. Finally, on November 29,2004 I went to my GP. I had severe diarrhea and vomiting. I was rushed to the hospital. I was diagnosed with C-Difficle. My lower bowel was really bad. I was in the hospital for 26 days. I didn't think I was ever coming home. While there they put a PICC line in my right arm. It got infected and I got a deep vein thrombosis in my right arm. My blood sugar went haywire and I had to get insulin shots every 4 hours to control my blood sugar, lovenox shots every 6 six hours for my DVT. My stomach was black and blue from all the shots. Then I got fluid around my heart and then my lungs started acting up and I was put on Advair. Heparin and Warfarin was given to me to thin my blood. I finally got out of the hospital on December 23, 2004.
Now everything was good for two months. I decided I would go ice fishing in Canada again (I love to do this). Unbelievable, it happened again. We stopped to go to the bathroom and urine came out my rectum and massive amounts of air out my penis. Now I'm getting a little depressed. My sons and daughter told me to go to the Mayo Clinic. I did in early May of 2005. They found another fistula. I couldn't believe it. I spent four days there going thru all of the tests I previously did.
It was decided that I would have urethral/bladder surgery on June 17, 2005. It was a nine hour operation with 3 surgeons working on me.(This is the 6th time being opened up in the same place.) They reconstructed my bladder, fixed the fistula, put J stents from my kidneys to my bladder, and reconstructed my abdomen. I was there nine days.
I'm almost done with my story. If you don't want to post this that's okay. This is very therapeutic for me.
July 26, 2005 I was in the hospital again. I was diagnosed with MRSA. Seven days in the hospital. August 29, 2005 back to Mayo Clinic with a severe bladder infection. Four days in the hospital. September 19, 2005 back in the hospital again. I was diagnosed with sepsis. Eight days in the hospital. I didn't think I was ever going to make it. My temperature would go up to 107 degrees. They would pack me with ice bags and have a big fan blow on me to get my temp. down. Then it would go the other way and they would put warm blankets on me. I would sweat so much they had to change the sheets on my bed 4 times a night. Finally, the 7th day in the hospital it broke. All I could think was I made it again!!!
I don't know if this is related to prostate cancer but I had torn retina in my left eye in August of 2006 and had laser surgery to repair it. In June of 2007 I had a torn retina in my right eye and had laser surgery to repair it.
August of 2005 I was taken off Lupron. Hurrah!!! The urologist/oncologist said I would probably a recurrence within 5 years. My PSA stayed at less than 0.1 for almost a year. Damn, almost 5 years to the day my PSA started doubling. I would get PSA's every 3 months. It started at 0.2,0.4,0.8,1.6, and finally 3.1. In December of 2007 I started on Lupron 4 month injections again. Nasty!!! Also December of 2007, they found another fistula between my bowel and bladder. Unfreaking Believable!!! I told both surgeons no MORE KNIVES!!! I can't do this anymore. I'm really getting tired of surgeries. It's now in the wait and see mode for me.
I forgot to mention I dealt with these nasty happenings while teaching until 2006. I retired in June 2006 after 34 great years teaching math to middle school students.
Finally, I have to say I'm not afraid of death, I've been close a few times in the last six years. What I would tell anyone with this disease is if you are a fighter stay positive, have a good sense of humor, and have a good support group of family and friends.
Thank you for listening to me. I've never told anyone about this before except for my family and a few close friends.
October 6, 08: I had X-rays of my left femur and pelvis and a bone density scan. On October 8, 08 I got good news!!! No bone metastis in my left femur or pelvis. However, I have osteopenia in my left femur. Boy can I live with that!!!
On Dec. 17th, 2008 I had a PSA test. On the 19th of December 2008 I received my result. It was < 0.1. Hooray!!! My oncologist says I can go on intermittent therapy. I'm so happy!! Off Lupron until PSA rises.
I hope this lasts for a while. Maybe I'll start feeling normal. This was a great early Christmas present for me. Happy Holidays to all.
On March 30, 2009 I saw my oncologist. My PSA is still < 0.1. I'm happy about this!!! It's been 7 months off Lupron. He said when my PSA rises, back on Lupron.
Went fishing in Canada again in February, I got really sick. Vomitting, diarrhea, fever, chills, and bones hurt. Not to much fun! Got thru it and caught a lot of fish. My oncologist is going to talk to my colon rectal surgeon about something to do about the communication between my bowel and bladder. I see the surgeon April 16th. I won't do any major surgery. Hope it's something simple, but not expecting that.
Other than that LIFE IS GOOD TO ME!
June 23, 2009. Yesterday, I got my 3 month PSA Test. Today I got the result. Not good for me. It was 0.4. I see the urologist/oncologist in September. He might call me sooner when he sees my PSA result. Looks like I'll be going back on ADT. Damn, I really don't want to do this but, I'm sure that will be the case.
Other than a rotten PSA result for me, LIFE IS GOOD TO ME!!
August 17th I got a PSA test. The next day I got the results. It was 0.7. Not good for me!
I had to move my appointment up with my urologist/oncologist because of pain in my left hip. On August 24th I saw him. I'm back on Lupron. Ick!! They are going to schedule a bone scan for me. If it shows up as a possible hot spot he wants me to get a MRI. It would be really nice if it's nothing.
I'm hoping for the best. Other than LIFE IS GOOD TO ME!!!!
PSA is now 0.80. On September 17, 2009 I had a total body bone scan. I got the report on September 28, 2009. Good news!! It says no evidence of metastatic disease. It does say warm activity at the origin of the left 6th rib, arthritic activity at L3 and L4 as well as the sternocleidomastoid junctions and ankles. There is activity of degenerative disease too. Even though I have pain, I can live with it.
Other than that LIFE IS GOOD FOR ME!!!
On Dec. 21st I got my 4 month PSA test. I received the results the following day. It was 0.1. On Dec. 28th I saw my urologist/oncologist. My PSA dropped from 0.8 to 0.1. I thought I wouldn't need another Lupron shot but he said it had to be < 0.1. Damn, another Lupron shot.
I also need to get an MRI due to hip and spine pain. He said even though my bone scan in Sept. didn't show metastatic disease he wants me to get an MRI to make sure nothing was missed from the bone scan. I'm hoping the MRI shows nothing too.
Wishing everyone a Happy New Year and all your PSA's are good! Other than that LIFE IS GOOD TO ME!!!
On December 30th I had a MRI. Oncologist said no metastisis. That's great news. He sent me to a pain mangement Dr. This Dr. said I have nerve and muscle damage and severe bone degenerative disease in lower spine. I'm now on Lyrica. I'm also doing aqua therapy to strengthen the muscles in my back. This has really helped my pain. I've not taken oxycodone for 3 weeks!!
Pain Dr. sent me to a Neurologist Dr. This Dr. gave me an EMG on my arms and upper spine. Ths test really really HURTS! I'll never do another one of those tests ever ever!! It's like torture with electricity and needles. I'm awaiting the results from this test.
On the lighter side I went icefishing in Canada again. Caught alot of fish and had a great time. I, also, was blessed with another grandchild, Kaden Timothy Hotujec.
Other than that LIFE IS GOOD TO ME!
I received the results from my EMG. I have polyneuropathy. It said I have severe nerve and muscle damage in the upper extremities and upper spine. My GP sent me to an Orthopedic Hand/Upper Extremities Surgeon on March 11, 2010. His options were therapy or surgery. I declined the surgery (will never ever do anymore Surgery). So I'm now doing hand therapy which includes Dexamethasone Electrical Transference treatments.
He said I needed an MRI of my upper spine. On March 18, 2010 I had that MRI. He sent me to an Orthopedic Spine Surgeon. On April 6, 2010 I saw this Doctor. His options were therapy, needle injection to spine, and surgery. He said because I've had this since the beginning of my cancer journey he thought therapy and needle injection probably wouldn't work and surgery would probably relieve the pain but not the numbness. I declined surgery (will never ever do anymore Surgery).
So, now it's off to neck therapy. I hope it works. I really believe this is all due to the Lupron which I've been on the last 5.5 years out of 7+ years I've been dealing with this nasty disease. I have no facts to back this up. I just feel this way because before cancer I had none of these silly things I'm dealing with now. On April 30, 2010 I see my Uro/Oncologist and I'm certainly going to ask him that question.
Other than that LIFE IS GOOD TO ME!!!
I met with my uro/oncologist on April 30th. He wanted me to get another Lupron shot. I declined - to give my bones a rest. He agreed with me Whoopee!!! I've been off Lupron for 9 months now.
Neck Therapy included using a TENS (Transcutaneous Electrical Nerve Stimulator) unit to block the pain signal to the brain. I've been using this since May along with pain meds when needed.
I had a PSA Test August 26th. The result was 0.50. It's on the way up so I'm sure in the next couple of months I'll be back on Lupron. Not looking forward to that, but if it keeps be going I'm all for it!
On a sad note one of our fellow YANA members, Steve Berg, passed away. I was able to say my goodbye to him at the hospital before he passed away. R.I.P. Steve, I will certainly miss our late night chats we had on Face Book.
Other than that LIFE IS GOOD TO ME!!!
Since my last update, my PSA went up to 1.5 in December 2010. I was having pain again up and down my spine so onc/uro wanted me to get an MRI to check for metastates. I did not so on January 28, 2011 I got my Lupron shot.
As I have posted before, I like to ice fish. I went ice fishing in Canada the first part of February. While up there I rolled over in my bunk and something cracked in my sternum and spine. It was very excruciating pain. Got back and went to ER. Where my clavicle attaches to your sternum something pulled away. Really haven't felt good since that trip.
I had my PSA on June 27, 2011 and got the result on June 28, 2011. It was 0.20. I'm really happy!! See onc/uro on July 5, 2011, I will be getting my icky Lupron shot.
Other than that LIFE IF GOOD TO ME!!!!
On October 5, 2011 my PSA was 1.5. I started having pain in my spine again. On November 23, 2011 I had my first medial branch neurotomy at L2, L3, L4, and L5 with lidocaine. That's 8 shots, 2 for each facet joint to see if it relieved the pain. It did, so the second test was on December 7, 2011 with bupivcaine and that worked. Finally, on December 29, 2011 I had a radio frequency branch neurotomy where they burned the nerves at L2, L3, L4, and L5 at each facet joint. It seemed to work.
January 10, 2012 my PSA was 2.9. It's doubling every 3 months. As always in February 2012 I went ice fishing in Canada. Caught alot of fish but was in a lot of pain. On February 29, 2012 I had to have an epidural cortisone shot at C5 for the pain I was having. April 9, 2012 my PSA was 5.1. My uro/onc put be back on Lupron. He said I'd probably be on Lupron until it no longer works. I've had chronic pain in my bones and spine and I have been controlling it with 5mg IR Oxycodone every 6 hours. I will see him in August and I'll get my Lupron shot.
He mentioned if my PSA didn't go down I might need a bone scan.
Other than that LIFE IS GOOD TO ME!!!
I had another bone scan because my PSA was doubling every 4 months. No metastasis just more hot spots. It got to 10.1 and I was put back on Lupron and I was told I'd be on it until it no longer worked. It went from there to 2.9, 0.5, 0.31, and then 0.24. At the end of March it was discovered I had a DVT in my left leg. I was put on warfarin and 14 days of lovenox shots in the stomach area. I went in for my INR blood test and ended up in the hospital for 2 days. My veins had collapsed and they couldn't draw blood, finally an IV was put in and fluids were started. Then I had extreme pain on the right side to the middle of my chest up into my left shoulder. Through a CT scan (with contrast), blood tests. and an ultrasound I found out I have gallstones, the biggest which is 8mm and 4 others that are smaller. Never had any problems my entire life. I declined surgery (NO MORE KNIVES FOR ME) and I'm watching my progress to see what happens. I take 40mg of oxycodone daily for pain with 3 ativans for anxiety. Again, I say with no proof except what is happening to me that Lupron is the culprit! Uro/Onc says when I become castrate resistant we'll talk about the treatments that are available and go from there. In a month I'm coming up to my 11th anniversary with this nasty disease.
Other than that LIFE IS GOOD FOR ME!!!!
Today is my 12 anniversary of being diagnosed with PCa!
In the past year I've had to go through with the gall bladder renewal because of severe attacks.
I had a lot of blood in my urine so they found out I had a tumor on my bladder. I had a biospy and it was not cancerous. In 2005 The uro at the Mayo clininc said if I had to many cystoscopies I would become incontinent. Damn, he was right! They have been up my urethra 4 times with cystoscopies and catheter placements and I now am incontinent! I'd have to say it hasn't been a fun year! I'm still here and fighting!
Other than that Life is Good to Me!!
My PSA is slowing rising and uro/onc said eventually I will be going to a different treatment, but he didn't want to discuss that until I get to that point. It was 13 years in July that I've been battling this disease. I have chronic pain in my spine, hips, and femur. I'm taking oxycontin for the pain and ativan for the anxiety issues I've been dealing with. I will be getting another Lupron injection in September on the 29th.
I always ask him if I still have cancer and where is it. He says, yes and it's probably in the prostate bed and on my last MRI I had a spot on L5 that was inconclusive as to mestastasis. He said when my PSA goes up to 5 or more I'll be getting another bone scan. Right now it's too small to detect with any type of scan.
I must say that this disease is slowly wearing me down. However, you have to stay positive, keep fighting and have a good support group around you to keep you going.
My kids thought I had depression so I went to a therapist for 4 or 5 sessions. He said I didn't have depression, but I have severe anxiety issues and OCD. I kind of knew that before I met with him.
Other than that LIFE IS GOOD TO ME!
Since my last update my PSA has slowly been rising about 0.1 every 4 months. I had one dip where it went down by 0.1. Had a bone scan which showed basically the same as my last bone scan. My T score is <20. Since February of this year my bone pain has increased, so I take 40mg of Oxycontin every 12 hrs. and 10mg ir of Oxycodone every 4 to 6 hrs. I'm allowed to take more Oxycodone if needed. July 2nd of this year was my 14th year living with this nasty disease. I have Lupron injections every 4 months. I'm on Warfarin therapy for DVT's because I've had 2 in the last 14 years. I take Lyrica twice a day (50mg tabs) for my polyneuropathy. Other than that LIFE IS GOOD FOR ME!
On Nov. 11th I'll receive my Lupron Injection (Get these injections every 4 months). I've been on Lupron for 12.5 years out of the 16 years since my diagnosis. I was staged with advanced metastatic prostate cancer (pT3cN1MO). The urologist/oncologist said I will be on this treatment until it's no longer effective. My QOL is terrible, but I'm still alive so I'll continue with this treatment until it's no longer effective or I just can't stand it anymore. The only thing I do for exercise is walk 4 mi./day M-F and 3 mi./day on Sat.-Sun. I do this to put pressure on my bones. I walk on a treadmill because of the neuropathy I have. I need to use the handrails so I don't tip over. Other than that LIFE IS GOOD FOR ME!
Timothy's e-mail address is: packandbadger AT aol.com (replace "AT" with "@")