Home - Day 4

First of all, this post contains pictures of my surgery. They are graphic, so if this kinda thing makes you queasy, you've been warned.  They are here to educate.  Dr. Holzbeierlein had his chief resident take them with an iPhone. I find that somehow amusing... and they turned out well.

Today is day 4 at home and I feel fine.

For the past two days, I've cut way down on pain medication and haven't had any since yesterday morning. The stuff makes me nauseous anyway.  They say the intestines are the "laziest" organs we have. Since having 18 inches of my small intestine removed to create a new bladder (neobladder as it's called) my bowels have been "waking up" since last Wednesday and are just now beginning to calm down. Lots of gurgling and rumbling. Today I can honestly say that the only slight discomfort I have is at the incision site. The gas pains and intestinal rumblings have subsided and although they remain, they are far less bothersome and intense.

Living with two sets of catheters is humbling, interesting and requires some work. No doubt it cramps my style and mobility is limited, but there is no pain and aside from the initial psychological jolt one gets from seeing them for the first time, they really are no big deal.  I have to laugh at myself... for most of my life I've made jokes about the fear of catheters. I mean, yikes -- the entire mental imagery of catheterization stirs up images of frightening dimensions for most any man. I would joke in my youth that if I were ever to face this, that I must be rendered unconscious before anyone would put something in my, up my, well, you know what I mean. Guys, the truth is, it's no big deal. It's just an inconvenience.

The tubes all come out on February 5th. Only 8 days from now.

My appetite is not completely back. I eat very little. But I drink a LOT of water. Doctors say it will take six weeks for my appetite to return to normal. As of today, I'm down 18 pounds since surgery. I've sworn an oath to that the pounds I lose will not come back. Better diet, less proportions, more exercise are all the plan.

Thanks for following along. In case any of you doubt prayer... don't. I'm cancer free. Prayers work!

Now... here are the pictures....



Photo 1: Dissection down to the bladder, exposing the contents of the pelvis.

Photo 2 & 3: Prostate and bladder








Photo 4: Pelvis, sans bladder/prostate

Home at last...

The Doctors started coming in at 5:45 this morning, by 7:15 Dr. H had come in with the good news that Doug would be released today!  Lots of stints and I.V.'s to be removed.  Switched from the morphine PCA to pain meds by mouth. Chicken noodle soup for lunch and 8 hours and 15 minutes after being released, we were finally home!  Doug still has two tubes which create a bit of a "walking obstacle" and need to be flushed 2-3 times a day, but they are already manageable and we think we'll get better with a little practice.  Food is going okay, he isn't too hungry and food tastes a little different as Dr. H said it would.  Everything will just take a little time.  Doug's glad to be home and while he's looking forward to sleeping in his own bed tonight, we're truly grateful for all the great Doctors and nurses and tech and assistants that helped us so much during his stay.  Thank you all! 

close up of the stint...

OMG Did this come out of ME?!?!?!

Dr. Woodruff removed this approximately 2.5 foot long stint (one of two) in preparation for going home!!! The stint came through the opening in Doug's side, from where the neobladder now drains, into the neobladder, up through the ureter and into the left kidney.

Day #5 A.S.

Wow!  What a difference a day makes!  Much better today.  Here I am enjoying some yummy cream of chicken soup! I also had cream of wheat for breakfast.  I've been getting up pretty well today and finally had success in the bathroom!  This is an important step toward going home.  Hopefully I will get released tomorrow. 

I even learned how to flush the neobladder today... it's not that bad of an ordeal and only continues for about two more weeks.  But, doing so twice a day is important for the neobladder to heal. 

It's good to be feeling so much better, I'm back to flirting with the nurses and joking with the staff. I've really turned a corner today, I even shaved!  Thanks again for all your thoughts and prayers!  I'm ready to go  home and face the next chapter.

Day #4 A.S.

Good Evening, it's Saturday night and I am having a much better day today.  They have been giving me some nausea medication which seems to be working.  My system is having a little success "getting going".  The BEST news: Dr. H came in yesterday evening with the results of all the pathology from surgery.  The removed bladder had totally cancer free margins, no cancer cells were found in the prostate or the lymph nodes.  Yeah! The cancer is GONE!  Now, I just needs to heal.  

I'm working on ingesting some clear liquids, he worked on about a 1/2 cup of red Jell-o for about 6 hours today...  I did'nt get to much down, but... it didn't come back up either!  Dr. Woodruff came in and showed me flush the neobladder when he gets home, very interesting and amazing what this surgery entails, small challenges for the next few weeks for the promise of a normal life from then on...

I went on a walk tonight with a nice assistant who took my picture.  I walked all the way around the nurses station and back to my room.  I am so sorry to be missing my cousin Misty's wedding tonight.  My thoughts are with Dana and Tom and all his family tonight and I wish I could give the bride a hug.  But, I am looking forward to seeing the pictures and the fabulous movie he is sure Dana will create. 

Notes from Doug - I'm aware that a few of you came by to see me on some of my "rough days" and I apologize for being out of sorts and unable to enjoy your visit, but the fact that you came means a lot, thank you!

Day #3 A.S.

Good Morning, well at least it is for us, (not so much for Doug).  Was quite nauseous through the night, trying to drink juice and Sprite did not go too well, so he is back on ice and small sips of water. Having a few challenges, getting the whole digestive system to wake up is taking time and creating some discomfort.  The (leaking bag) scenario continues...  One of the Urology docs promised to get the ostomy nurse into evaluate this situation and hopefully come up with a better solution.

He is not up to any visitors today, I will be sure and post as soon as that changes in case you were wanting to see him.  He is getting up and walking where and when he needs to however so that is going well.  Dr. H ordered a sonogram of his legs to check for any blood clots and all was clear!  He's just trying to rest and get all his tummy business in better working condition.  Today is a day of sleeping and only dealing with what is medically necessary.  Please continue to pray for his recovery, and for this hospital...  I can't say enough good things about Dr. H and the surgery and recovery teams, but the day to day floor care is another issue, sometimes awesome, sometimes scary and dreadful.  The whole concept of a "teaching hospital" sounds wonderful until its your precious somebody they are learning on... (my note, not Doug's - he's a nicer person than me and would never say anything like that:, wink/smile :)

Day #2 A.S.

Good Afternoon!  Today seems to be a typical 2nd day after surgery;  anesthesia starts to be metabolized out of the body, stomach/bowels start to wake up and grumble, weakness begins to set in and pain begins to be more localized.  Doug is feeling very tired and a little weak today.  Dr. H still wants him up up up and on his feet.  Which, (yeah!) he successfully accomplished today.  This mornings' Doug Billings workout routine consisted of getting up and out of bed and walking, with the aide of a walker, to the hall and back and sitting up in his chair enjoying some yummy juice!  Yes, that's right, today is the beginning of ingesting clear liquids!  He's been taking sips of water and juice so far.  Taking it very slow so as not to become nauseous.  His optimism, great attitude and goofy sense of humor have been completely unchanged by this surgery, which has been strong medicine for us. 

Technical stuff;  Having a little difficulty with the urine drain pouch (leaking).  Had a great nurse this morning that put on a new one with more and better adhesive and position adjustment that allows gravity to be our friend...  Dr. H came in this morning and flushed the neobladder and removed the dressing from the incision.  The drainage tube and collection system is working just fine (we call it the hand grenade, because that's about the size and shape.) Doug has a little bit of a fever which Dr. H said is typical.  It is being watched closely and a Tylenol suppository is bringing it down.  He still has the morphine button, (yeah!) Doug's humor is fine, when it turns green, which is when you can push it to deliver the medicine, he says, "yummy", makes me laugh every time, but I'm easy...  Catheter still in place and not causing any discomfort.  He's still doing the breathing exercises and still has an IV.  No BM yet but he's been given some meds to get that system going... So far so good!

Doug's incision and tubes (...assuming you want to see it)

The incision is vertical and about 3.5 inches long just above the pubic bone, there are "steri-strips" covering the incision, no visible stitches or staples.

The thin red tube on our right (Doug's left) is the drain and drains into a little plastic receptacle about the size of a lemon, (it's fine and doesn't leak at all). 

The "bag" on our left (Doug's right) is the receptacle for the tube that temporarily drains the urine from the kidneys while the neobladder heals.  It's a little tricky and can leak but still not nearly as "gruesome" as we were anticipating, we think this will be fairly manageable for the few weeks he has to heal this way before the procedure to activate the neobladder. 

Day #1 A.S. (after surgery)

Good Morning! Dr. H says this will be a boring day today. The most important thing is rest. Everything inside is "sleeping" from the surgery and all the anesthetic. He wants Doug to get up and walk today, this will help wake up the bowels. We tried at about 8:20 this morning. He did great, he sat on the edge of the bed and stood up! Yeah! Our aide Jessica said that was a very good first step. Doug feels like his legs are asleep, and all the tubes coming from everywhere make this a bit of a challenge. But one we are intent on meeting head on this day. Just a few more hits from that awesome, green light, morphine button and I think we will make it to the door and back by some point today, THAT is our goal!

Dr. H also said he made Doug's incision "plastic" all stitches and staples are on the inside, wow so Dougie, (unlike me with all my scars...) will be looking hot in that Speedo bikini this summer after all!

No food or drink again today. He only gets to suck on this green sponge thingy soaked in ice water. I know it sounds simple, but you would be surprised how happy it makes him. He also has a little gizmo he needs to take deep breathes into 10 times every hour today for the lungs. This is very important and he is a good boy about doing it. He awoke in great spirits today, full of gratitude and optimism for this new life.

Out of recovery and into his room

I feel great! Mentally and physically, I've just conquered cancer! This is my nurse Dayna, the hospital is at full capacity and I just got into my room at 9pm. Room #5308-2. Wow, what a long day. I'm cancer free and Scott Brown won Massachusetts, God was hard at work today! :)

Surgery is over and All IS WELL

I promised all would be well and I was right! Dr. H., Mom (Anne), DeAnn, Uncle Mike all gathered in the family conference room. He was very pleased with every aspect of the surgery. Bladder and prostate removed and all looked fine, couldn't feel any tumor in the bladder. Nerve sparring procedure went very well, he was totally pleased with that aspect of the surgery. Totally clean margins and all lymph nodes urethrae and everything are all totally negative for any sign of cancer. The construction of the neo bladder went just as expected with no complications or problems at all. Doug did fine throughout the surgery, no drop in blood pressure, did not receive any blood and all his vital signs were good through the entire 4.5 hour surgery. He will be in recovery for the next 2 -3 hours.

We are so grateful for all your well wishes and prayers and KNOW that God heard them and they worked! We are so grateful and feel so blessed to have had Dr. H for this surgery I can't tell you how comforted and blessed we feel to be in his skilled, competent hands. Not only is he a gifted surgeon but an absolute prince of a man, so kind and caring. Thank you Dr. H!

The Big Day...

The big day finally arrived! We were at the hospital at 5:30 am as planned. A lot of waiting and prep. Here he has his IV's in, and the doctors, nurses and anesthesiologists are coming in and out with consent forms...

Dr. H came in at about 7:40 in great spirits, full of energy (Dr. H is the original energizer bunny). Mom (Anne), Pat and Uncle Mike were with us. Dr. H joined us as we all held hands and gathered around Doug as Pat offered a prayer. Dr. H said he had already prayed himself about Doug's surgery so now we are doubly covered.We know our  friends and family are holding him tight in their thoughts and prayers right this minute and we feel all of them and are so grateful for you all.

Praise God! The first good news we've had since this whole ordeal began. The pathology report is back, the margins are clear, all tests for additional or spread cancer are NEGATIVE!!!! The operation is proceeding as planned and the neo bladder is being constructed as I type this! Doug will be SO happy when he wakes up. In pain, but happy and cancer free! Now we just wait for Dr. H to complete the surgery and come out and give us all the details. Then, Doug will be in recovery for 2 -3 hours then transferred to a room. God is good all the time!

The night before....

Mmmmmm, yummy! No "actual" food the entire day before surgery. Only clear liquids. Here's I am  enjoying his green Jell-O. Nothing but tea, (really GOOD tea), broth and jello....

I have to be at the hospital tomorrow morning at 5:30. This means I will have to wake up at 4am!!!! The last time I saw 4am it was because I stayed up that late that night, not woke up that early... Not tonight, I am trying to get to sleep by 10pm...

I am more eager than anxious about the surgery. I trust Dr. H., God and the power of prayer and gift of love. Thanks to everyone praying for me during the surgery tomorrow. The surgery is scheduled to get under way at 8am and should last 4-6 hours. I'll post from the hospital as soon as we hear from Dr. H after the surgery is complete.

Tomorrow afternoon I'll be cancer free and will begin the process of recovery!

Bone Scan & CT Scan Results

Both scans were NEGATIVE!!! No cancer in bones or in lungs! WooHoo! Now... we focus on the surgery -- one week from today. Mind and God over matter... the cancer doesn't stand a chance. Once the bladder is gone, the cancer is gone. As long as there is not any trace of it outside the general bladder area, I'm good to go. All will be fine. Doug

CT Scan of lungs and full-body bone scan and Pre-Admission

Top picture: This is not the Shroud of Turin... just my bones
Middle picture: Entering the Gamma Ray bone scanner  
Bottom picture: In the CT scanner for pictures of my lungs I was at KU Med Center bright and early - 7:00am.
First stop: Radiology. An IV stint was put in my left hand. I was injected with gamma fluid that enables the bone scan to identify possible cancer in the bone. It takes 3 hours for this gamma fluid to take effect, so I was on to other stops...  
Second stop: CT scan. This is precautionary -- to make sure my lungs are cancer-free. Was done in about 10 minutes. Results to be given to me later today or tomorrow.  
Third stop: Pre-admission. I filled out all of the paper work and forms for the surgery. I was given a living will that Stacie and I will complete together. Blood work drawn and vital signs taken. Blood pressure is 122/79. Good. I had a couple of hours to kill. Cafeteria. I think I'll take Stacie here for our anniversary dinner! :)
Fourth stop: Back to radiology for the bone scan. Took 20 minutes. Had to lie on a narrow table and hold still. Took a short cat-nap. Got to see images of my bones right away but won't know results until tomorrow. Surgery is on track for Tuesday morning, January 19, 2010. Thanks to all of you for your continued prayers and support. This is all going to be fine....

Talking to former neobladder patients

This past weekend Stacie and I spoke with three neobladder recipients whose names were given to us by Dr. Holzbeierlein's office. Overall we were very encouraged. For the sake of this blog, we will refer to them as "Bladder Buddy #1", "Bladder Buddy #2" and "Bladder Buddy #3".
 
Bladder Buddy #1: underwent the surgery at age 65 - three years ago. Ironically, he was a former instructor of mine at UMKC. He was very inspiring to listen to as he indicated no problems with post-operative issues.  

Bladder Buddy #2: underwent the surgery at age 63 - one year ago. He said he was standing in a deer stand hunting bucks 6 weeks after surgery! This made us feel good... not that we plan to kill Bambi, but at least we could if we wanted to. (Also... he saw the 3D IMAX version of Avatar and sat through the entire 3 hours without having to take a restroom break! Yess!)  

Bladder Buddy #3: underwent the surgery at age 38 - five years ago. He had a mix of encouraging experiences and some complications (he is a diabetic) that were unusual. But, he never had to self-catheterize. I was extremely happy to hear this!  

Summary: We are confident a normal life is not only possible, but expected. All Bladder Buddies are cancer-free and lead normal lives. We are going into this thing with more confidence and expectations of normalcy. Next steps -- a CT scan of my lungs and a full-body bone scan to make sure it hasn't spread.

Meeting Dr. H

Blizzard last night made an 8am meeting with Dr. Holzbeierlein a bit of challange! Okay, I met Dr. H and was very impressed.  I am committed to winning and keeping my sense of humor with this along the way. Cancer, smancher. Here's what I found out:

• The name of my cancer is Myxoid Leiomyosarcoma
• It is rare. There are only 18 documented cases of it and I'm only the second person to have it in the bladder
• The only treatment for this type of sarcoma is surgery
• The tumor is at the base of my bladder and aggressive
• The bladder, prostate and surrounding lymph nodes must be removed
• The good doctor will harvest 18 inches of my small intestine and create a new bladder, called a "neobladder" which will function as a normal bladder (so I won't have a urostomy)
• Check out a video of the making of a neobladder: www.kumedurology.com/uro_oncology.asp#bladder
• Dr. H is very confident that this will eliminate all of the cancer
• Once removed, there is an 85 - 90% likelihood that it won't return
• As a precaution, I will have a full bone scan and CT scan of my lungs next Monday (Jan. 11)
• Surgery is scheduled for Tuesday, January 19, 2010
• I will be in the hospital for 7 days
• I'll be laid up for 6 weeks total
• I'll lose 20-25 pounds. Score!
• I will have tubes, lots tubes coming out and going into my body for 2 weeks
• These tubes include all men's dream... the lovely catheter
• After 3 weeks I will be tube free and they will "activate" the neobladder
• This is a major surgery -- ranking up there with the most serious they perform. It should take 4 to 5 hours to complete

There is a long road to travel here and arriving at normalcy will take some months, but I'm looking forward to being cancer-free and getting on the road to recovery.

Sacrament of Annointing of the Sick

January 4, 2010 One of my best friends, Monsignor Robert Murpy (Murph) anointed me last night with the sacrament of Anointing of the Sick. Another dear friend, Fr. Paul Turner, wanted to be there, but was on a pre-scheduled trip. He was with us in spirit! My closest friends and family were there with me:

• My sons, Grant and Michael
• Mom
• DeAnn my sister and my nieces Jessica and Megan
• Chuck and Denise Zeikle
• Pat Graff

We all met at my place at 5:30. Lots of laughs, reminiscing about our life-paths and history! Then the anointing and then more laughs, pizza and tea!
We are all aware (very much so) of all of our friends and family who are out there praying. Thank you!
We love you.

Put in touch with KU Med Center Urology Dept.

December 28, 2009 I will be referred to KU Med Center. Dr. Jeffrey Holzbeierlein is apparently regionally renowned for bladder removal and construction of what is called a "neobladder" Here are a couple of links that describe what I'll be going through: http://www.kumedurology.com/faculty_holzbeierlein.asp http://www.kumedurology.com/uro_oncology.asp#bladder (once here, read the blurb and then click on the link to "Neobladder" video. We get to meet Dr. Holzbeierlein on Thursday morning, January 7, 2010. We'll have much more to share after this meeting.

How it started...

December 12, 2009 3 pm Busy Saturday at Tea Market. Doug called me at work. "Guess what, I just had blood in my urine" Wow! What could that mean? Go to "Urgent Care", see what they say... They said, "possible bladder infection or UTI..." Cipro, 2 times per day... and wait....

Sunday we went to church and then to lunch... seemed to clear up a bit. Hopeful it was an infection and the antibiotics were working. Monday, no go! More blood worse than before... passing blood clots.

Wednesday CT scan and appt. with Urologist Dr. West. Out patient surgery scheduled for Thursday 12/17/09. Thursday; tumor discovered and removed, turned into overnight stay... Now we wait for pathology and more information regarding the tumor.

Monday 12/28/09 phone call from Dr. West pathology complete, diagnosis of bladder cancer: Myxoid Leiomyosarcoma. Rare tumor, .01 percent of all cancers are this type. Only 18 reported cases, none in the bladder...