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The correct address for my fishing blog is tomgoesfishing.blogspot.com

Last Post from Tom on this site

This will be my last post (knock on wood) about my medical adventures on this blog. From now on, if you want to learn more about my recovery go to

www.tomrambles.blogspot.com

where I will be commenting on whatever is on my mind. Also don't forget the other two blogs:

www.tomremembers.blogspot.com

and

www. tomfishes.blogspot.com

Things seem to be going well, it is wonderful to be wearing normal clothes again.

Thanks for following my misadventure, and lets hope future posts will be about more exciting things!

Tom

I'm Home

As Samwise Gamgee said when returning after saying goodby to Frodo at the Gray Havens:

"I'm Home"

And so am I. This last and hopefully final episode is over. Time to heal, time to get stronger, time to rejoin my life.

I had a great visit with John, who came up from Colorado yesterday, and helped us make our escape this afternoon.

I love all of you. Thanks for your support.

Tom

  If all goes well tonite and tomorrow I will be homeward bound in the afternoon. The docs have removed the cath and the drain today and are watching the results. Thank you for your prayers and support, the visits, calls, cards, and kindnesses. The world is better because of you--- especially for me. I'll update by the weekend and sign off now!  Tom

Well, here are we on day 29. Tom has become re-ensconced in the Huntsman after leaving the 3rd floor of U of U med center yesterday afternoon. They tend to shift cancer patients back to the H when they can. He had a good night's rest after visits Sunday---talking and smiling. His vitals are strong and he's responding well to the high-powered antibiotics. Today they want him to start back on the Huntsman highway and get back to pedestrian and carnivorous ways. He's had an inflammation on his left lower arm where the arterial line was, but it's better this morning. Some reoccuring pain in the belly lingers. Up above the valley air pollution, the sun shines brightly into the room and hope springs eternal that this too shall pass!  But chances are, he'll be here for a bit.

Tom's recovery

Tom returned home Jan. 5 in a snowstorm. He was making progress toward having the cath and abdominal drain removed this week on Jan. 15. Now he's back in the hospital with sepsis in the surgical ICU at U. of U. Med Center. He's being treated with Vancomycin, Pepperacillin, and Zosyn. Dr. Stephenson yesterday said it could have been the cath removal possibly that began it or something else. Please pray for him. He said the pain from this infection which centers in his abdomen is worse than anything so far. Thanks for the visits from family----they help us all a great deal!

ruth ann davenport
@ wasatch elementary 801-402-2650
3rd grade teacher
Please note my new email address:
rdavenport@dsdmail.net

Leg Bag

Tom here:

I finally got around to putting on the leg bag that came home with me from the hospital. I hadn't bothered with it, thinking I was tethered to the toilet anyway, and any clothes that I wear would probably get wet, since the diaper sometimes leaks where the catheter tube comes out of the side.

Well, I was wrong. I hadn't realized the value of even 45 minutes of unfettered freedom! Instead of being stuck in the bathrobe and pajamas I have been wearing (altered in the front so the tube could get out) I was able to dress in sweat pants and a sweat shirt, put on and hat and a vest and go for a good walk on a bright, sunny winter afternoon. Coming back, I picked up my newspaper and emptied my mailbox... what freedom!

Life is good.

Tom

Tom's new blogs

Tom here:

I have started three new blogs of my own. They can be reached at

tomremembers.blogspot.com

tomrambles.blogspot.com

tomfishes.blogspot.com

This blog actually belongs to Nathanael, that is why I start every post with "Tom Here" since the computer will say it was posted by Nathanael.

At the moment, only the tomremembers site has any posts. The blog itself is titled "450 East" and is intended to be the memoir that most of us put off until it is too late. Its interest and accuracy will be dramatically improved if friends and family who have shared their lives with me comment about details and add their own memory of events related.

I doubt very much I will post to it every day after things settle down. Right now I have a little bit of time on my hands, but it will be something that will grow at its own pace.

The other two blogs will be for commentary on what is happening (tomrambles) and descriptions of past and future fishing trips along with pictures, flies, etc. (tomfishes). There will be many pictures in all the blogs once I get this software figured out. I have lots of pictures.

Tom

Reality Check

Tom here:

I am up again in the wee hours after changing diapers, cleaning and greasing with A&D ointment in an attempt to protect my skin. As I look forward to the possibility of having my catheter removed on Thursday, I looked at our record of urine output and started doing some math.

I have been producing somewhere between 2500 and 3500 cc of urine a day. The volume depends a lot on how much I drink, and how much has been collected be the diapers, but just for the sake of calculations, lets say that after the catheter is removed, I will have to deal with 3000 cc of urine a day.

If I am completely incontinent for a while (something not unlikely, since I have been beat up by a month of catheter wear) I will be dealing with three to four times as much urine as I have dealt with with the leak. I may never make it out of the bathroom! This was my father's situation, and the reason he wore an external catheter. If I am able to hold 100 cc of urine in my bladder before I start leaking, I will have to urinate 30 times a day, or a little more than once an hour. Sounds doable except at night. I have noticed that my output increases as much as four or five times when sleeping, so the frequency of urination would increase to the same extent.... I could never fall asleep.

As my ability to hold more in my bladder increases, then everything gets better. An average male, in good health, can hold more than 1000 cc in their bladder overnight. But I have never been that average male. Even in my late teens and 20's I was never able to go through a night with out waking up at least twice to use the restroom. I doubt my bladder capacity has ever been more than 600 cc.

On my mission to Austria we typically rented a bedroom in someone's home. I remember one home in Vienna where the Frau of the house confronted me about getting up at night to use the restroom. She didn't want me to do it, she said it was making it difficult for her to sleep. This was where I discovered and starting using what I called the "Happy Bottle" a two quart or two liter container to use at night. (I still do this when camping). I think the Frau suspected that something like that was afoot, and probably disapproved of it as well, but never said anything about it.

Anyway, all of these things will have to be worked out by seeing what happens. And since we've gone this far in this journey together, I will keep you posted. After all, I suspect many of you following this blog are males, wondering if you will be next to deal with this stuff, so you have a built in interest (so to speak).

I will start getting some answers tomorrow night (I hope).

Tom

More on Catheters

Tom here:

Yesterday I called Bard Medical Division, the maker of my catheter, and tried to get in touch with their R&D department and tell them about my idea for catheter that actually works, because it controls both in internal urine and any external leaking with the addition of an external catheter. I talked to a nice lady in charge of product complaints, she took my number and said "I will try to transfer you to R&D" which didn't work and I was eventually disconnected. I never received the call back, and will try again today.

I don't know what the state of the art is in external catheters, but the basic idea is very familiar to me since my Dad wore one for the last 14 years of his life and in the final two years I would help my mother install it when Dad's dementia robbed him of the ability to do it himself. Basically it is a large, condom like sheath, the outer part collects the urine and sends it to a collection bag, the inner part is rolled up just like a condom, then rolled onto the member which helps keep it in place and protect the area from urine. A strap kept it all in place.

It had to be cleaned everyday and was a hassle, but a much better alternative that diapers, since my Dad's surgery left him without a sphincter (the barbarians) and he would have been in the same situation I am now with my catheter leak... no possible relief from urine exposure.

I also talked to my doctor's nurse about this issue, she said catheter leaks are very common.

With all of my conversations, I kept getting the feeling that the people I was talking to didn't really get it. I guess none of them have had to live with a leaky catheter for a month. This is a BIG deal. Thousands of dollars and hundreds of nurse hours are lost dealing with something that could be fixed. Not to mention the suffering of the patient, up every two hours changing pads and diapers and trying to keep a rash at bay. Fix it!

I'll keep trying, but I get the feeling it might take a more persuasive voice than mine to get the company to pay attention.

Oh, to you ladies out there, you might be pleased to know that I am using Maxi-Pads to extend the life of my "brief" (nurses word for a diaper when talking to patient. When talking to another nurse it is a diaper). Yes, I am getting to enjoy a bit of your world. If you feel in some strange way revenged, that is fine with me.

Tom

Rising From the Dead

Tom here:

This is what it is like everytime I wake up from a nap or from sleep: The first thing I am aware of is a pain in my abdomen and that my legs and feet seem to be paralyzed. I think the Castle is under siege, and wonder where my nurses and armed guard are and why they aren't helping me get up and why they aren't they protecting me. Then I remember the evil forces that want me dead.

Slowly I start to become aware of my real surroundings, that I am Tom, and at home, and no one is going to help me, and no one wants me dead. I work to get my self out from under the covers, I swing my numb paralyzed legs over the bed, and let their weight pull down as I push myself up. I sit on the edge of the bed and continue to try to regain reality. My legs feel paralyzed because of the edema and swelling left from weeks ago, something that will take time and movement fix. They aren't paralyzed, but they feel like stumps as I lumber into the bathroom and start the diaper routine which includes cold wipes and creams and new diapers and pads. Then I empty the foley and measure and record, and I have pretty much made it back to reality. I am up for a while, on the computer (like now) tired, but not sleepy, and not anxious to go through the whole experience again.

That is exactly what it is like.

Tom

Tom whines a little...

Tom here:

There is nothing in this world more worthless than a leaky catheter!!! You get the the WORST of both worlds! You have to deal with the unpleasantness of the catheter, and all of the hassles of uncontrolled urine.

The solution seems obvious, a device that is BOTH external and internal catheter. The external device collects the leak and directs it into the Foley bag.

You medical geniuses out there, go to work! Invent this and make a lot of money using my idea, I don't care. But FIX it!

So much for the soaring profundities of blogging. But I feel better.

Grumbling by my computer,

Tom

On Blogs and Blogging

Tom here:

One of the interesting twists of this experience has been my introduction the the world of Blogs and Social Networking. Of course I have read about these things, but dismissed it as a place where a lot of silly kids were busy saying silly things, something that I am sure on one level of the Blogiverse (is that a word yet?) is true.

But what I missed completely was the extent of a social communication revolution unequaled since Guttenburg invented moveable type. We are seeing nothing less than the Democratization of Discourse, where every individual can publish their thoughts and language, and whether their audience be large or small doesn't matter. They can have their SAY, and what they say is often beautiful and laced with ideas and turns of phrase that are breathtaking.

I am far from being a a blog expert, in fact, I have only read one blog: my daughter Lizzy's, but what I found there has thrilled me to the core of my English teacher's heart! My daughter is a writer! She is already a far better writer than her father, and if her own flesh and blood didn't realize that until he saw her blog, that alone should show how important this revolution is.

I am waiting to read my other childeren's blogs. I expect more surprises. And I hope that I haven't blown the whole thing by having them think "Daddy is looking over my shoulder." That would be a tragedy, since it is the unbridled flights of imagination and freedom of expression that makes the whole thing so wonderful.

So trust your old Pappy, he is much more broad minded than you think and wants nothing more than for each of you to be your own person and be happy. In fact that is the greatest thrill of his life, next to being married to the most wonderful woman in the world!

And yes, I have blown my cover. I was an English Major. I have been an English teacher. I am a horrible speller, and I constantly forget the rules of punctuation but I love grammar because it gives us a peek into the most amazing invention in the universe: language. And language is nothing more than what makes us what we are. After all, can we even be aware of our existence without language? Can we know what we are thinking if we haven't expressed it? We are creatures who live in our past, we only are aware of existence only after it has happened and our language helps us express that awareness.

And I love good language. I laugh out loud at the inventiveness of Dickens descriptions. I thrill at the imagery of Frost and Dickenson. I LOVE a good story, even if its literary merit will never make it a classic. I see Mark Twain as a kindred spirit, and hope to meet him some day. And I know good writing when I see it, and I have seen it in my daughters blog.

My dear Abby introduced me to social networking, helping me set up a Facebook account and start growing my list of friends. I haven't done much with that, but I see its potential. And again, while this seems to be a world for youth, the fact is older people might benefit most from a system of keeping in touch. Kids, help your parents get it, it will be a source of great joy in their "Golden Years" when family becomes more and more the center of their lives.

For years I have had the ability to use Apples excellent software to start my own blog on my .mac (now .me) account. I think I might do it, because I also have a lot to say and there may be some surprises in store for some of you who think you know Tom Davenport.

All the best,
Tom

And Now for some Good News...

Tom here:

The scans and tests this morning showed the pocket where the drain is is shrinking, and the leak healing. While a dye injection showed there is still a pathway from the pocket to the bladder (the dye went into the bladder) it is small, and because my bladder currently has no pressure (because of the catheter), nothing is leaking out. The plan is to keep both tube and catheter in for one more week to allow complete healing and then remove both. That will be next Thursday.

Hopefully I will still have skin in my crotch when that happens, after almost a month of a constant wash of urine, I have a pretty impressive rash.

The light is now shining at the end of the tunnel. Thanks for all of your interest and support.

Tom

Urine-R-Us revisited

Tom here:

Here is a simpler way to look at urine output since I have been home, on a daily basis from midnight to midnight.

Tuesday, 6th: 2780 cc Foley, 420 Pelvic drain.
Thursday, 7th: 2840 cc Foley, 0 Pelvic drain.

Today, I have all ready produced 1630 cc since midnight, and 0 for the pelvic drain. We flushed the drain last night with 10 cc saline, but still no output, other than the saline which drained back into the bag.

I think the catheter leak (which soaks a diaper in about two hours) would add 10% to 15% to the Foley totals, but that is only a guess.

Hopefully the scan this morning will tell the tale.

Tom

We have flushed the pelvic drain to see if it might be plugged, but nothing changes, in hasn't drained any fluids since yesterday. Tomorrow we will have a CT scan to see if the pocket and the the leak have closed, or if the fluid is simply collecting because of a faulty drain. We will tell you more then.

Tom

Urine -R- Us

Tom here:

At the heart of the last month has been urine, its plumbing, and its amount. During the renal failure face I was creating less than 500 CC for an entire day, during the last week as we tried to get the leak to close the ratio between the catheter and the stomach has been roughly 50-50. Here are the results since I have been home, they paint an interesting picture:


Date Time Foley(catheter) Pelvic Drain
1/5 7:20 pm 225 cc 320 cc
1/6 2:20 am 600 cc 370 cc
" 5:10 am 550 cc 100 cc
" 9:26 am 300 cc 50 cc
" 1:11 pm 300 cc 10 cc
" 2:50 pm 300 cc 5 cc
" 6:38 pm 180 cc 3 cc (Note: I spent 45 minutes walking)
" 8:55 pm 550 cc 0 cc (sleeping)
1/7 12:36 am 600 cc 0 cc (sleeping)
" 4:08 am 700 cc 0 cc ( sleeping)

As you can see the pelvic drain has stopped flowing completely. I feel great. My fingers are crossed that the leak has finally healed.

Tom

Midnight Ramblings from Tom

Tom here:

I haven't had a typical night's sleep since this whole thing began. The best I can do is a couple of hours sleeping, followed by a period of activity. I just came from bed listening to Ruth Ann's quiet breathing and thrilled by the unspeakable luxury of having her by my side. I have never loved her more than I do now.

In fact for all of its ups and downs, the entire experience has been an enormous blessing, my own "It's a Wonderful Life" episode. I can't begin to describe the enormous well of gratitude and love that I have for all who have reached out to help me in this experience. First and formost is my family. I think we have drawn together in ways that we had never experienced before now, there have never been more hugs, and more "I love you"s spoken.

Next comes my LDS Ward. For those of you reading this who know little about the LDS Church, I will give you a short course: The entire Church is organized into small, neighborhood units or congregations called "Wards", typically consisting of around 100 families. Wards in turn are organized into a larger unit, called "Stakes" which contain 5 to 8 Wards. This is a lay organization, there are no paid positions at the Ward and Stake level, all leadership is voluntary and comes from the members. At the heart of a Ward is the
Bishopric, three good men chosen to lead the ward for period of typically five years. They organize the ward and call ward members to different positions. Underpinning all of this is the Priesthood which Mormon's believe to be Christ's authority, restored directly from Christ as part of the restoration of the Church. The Priesthood is held by every worthy male, with offices of Deacon, Teacher, Priest, Elder, and High Priest at the Ward level. All Elders and High Priests are called to a variety positions, one of the most common and fundamental being that of Home Teacher. Every Home Teacher is assigned several families to watch over, visit, teach and care for.
The women do not hold the priesthood, but share it with their husbands. The women are organized into a large organization called the Relief Society, which provides activities for the women of the ward. It is led by the Relief Society Presidency, three good women chosen to serve for several years. The men are organized into Priesthood Quorums, the young men 12 to 18 into Deacon, Teacher and Priest quorums, the men into Elder and High Priest quorums. Each of these quorums also are led by a presidency except for the High Priest Quorum that has group leaders (also three men).

The result of all this is a group of people who know, love, watch over, teach, and care for eachother. And I have been blessed by my ward and its members at every step of this process.

Before having my biopsy, my home teacher gave me a Priesthood blessing. After that blessing we both knew that I had cancer, because the inspiration and blessing was one of promised support of the Spirit, not a promise of being cancer free. When I got the biopsy results a week later, I was already prepared and ready to take the challenge.

Before my surgery I was given another blessing from my home teachers, then as the crisis began after the surgery I received a blessing from my brother in law (who is as Bishop). It was a powerful, spiritual and comforting blessing, I was promised that I would live, and that all of my bodily functions would be restored. I can't begin to describe how much it meant to me because at that time I was wondering if I was going to make it.

Next came a blessing from my own Bishopric, then another from the Stake Presidency. All of these provided comfort and helped with my recovery.

Add to this the support and prayers of the ward, and from you, my dear friends, and I can say that through it all I have felt a profound peace and gratitude and faith in a successful future.

While I was in the hospital, the ward was busy helping my family. Meals were prepared and delivered by the relief society sisters who organized this to spread out the burden and make sure enough came, but not too much. My neighbor has kept my driveway clear (we have had almost constant snow since I entered the hospital) and ward members helped in many other ways. This afternoon a ward member walked with me in the halls of the church house, I expect to have more walks, with more members as I recover.

Last Sunday was the first of the month and we had a special meeting called "Fast and Testimony". At the beginning of each month, each member is encouraged to fast for 24 hours and donate the money saved to the Church's Welfare system. While fasting, members seek additional spiritual guidance and insights. At the meeting on Sunday, members are invited to share their testimony, and share thanks and blessings with other members. This is strictly voluntary, members who wish to speak walk up to the podium.

My wife came up to bear her testimony and thank the ward members for all that they had done to bless us. Finally, she said, "If you want to pray for Tom, pray that the leak will be healed and stop". It interesting that it appears the leak HAS stopped, and it began stopping as soon as I arrived home, at the nexus of these prayers.

Next, I am grateful for the Nurses and staff at the Huntsman Center. What a wonderful group of people! All were kind, helpful, gentle, and competent. They are doing the greatest work in the world, and do it in a compassionate way. After all, my cancer, as cancers go, is very curable and easily treated, I met many other patients there in my walks around the hallway who have REAL problems. Chief among them was a young man named Brady, or Brandon. He had a rare cancer, typically only 75 cases a year, which required the doctors to open him from stem to stern, examine every organ, remove any showing signs of cancer as well as his lymph nodes. If the biopsy is positive, he will probably only have a year to live, leaving behind his wife and five children. He needs a miracle, and I will pray for that every day. Please do the same.

These nurses deal with heart wrenching cancer patients on a daily basis. It never ends, and must be a real emotional drain, but they keep performing the same wonderful service to all.

Well, this is long, even by my standards, so I will wrap it up. I love all of you, I thank you for all of the ways you have blessed me and my family.

The urine continues to pile up in the Foley bag, and none is coming from the stomach drain. I am very hopeful. I will let you know when I know for sure that the leak has stopped.

All the best,

Tom

Home from hospital

Tom Here:

Yesterday evening I was released from the hospital. We had a long, slow commute home during rush hour traffic and a snow storm with bad roads and bumber to bumper traffic, and I enjoyed ever minute of it!

I still have the stomach drain and catheter in tow and we will try to get the leak stopped from home.

Today there has been a very encouraging trend. Last night the Foley bag to stomach drain ratio was about 1 to 1, but during the night things began to change. First it was 2 to 1 , then 5 to 1, then 10 to 1 and now there is no significant amounts of urine coming out of the drain at all. This either means that the leak is closing or the drain is plugged. Obviously I hope for the former. The doctor has been notified, and I wait for his call. Hope for the best.

Tom

More from Tom

Tom here:

 

I'm walking, walking, and talking (but still have no appetites). My intestines have done their job. A few weeks ago my life was threatened by lack of urine, now I am swimming in it!

Everything has improved but the internal urine leak. Much better all around, even to discussing global warming and Obama with the night shift. 

Last night we watched the Sugar Bowl.  I am normally a BYU football fan, but last night I was 100% Ute!  Go Utes!  The nurses would wait to hear me scream whenever Utah made big plays or scores, and then come in for an update.  Utah won that game on every level.  They should be National Champions.  Obama couldn't have asked for a better set up if he is serious about dismantling the Bogus BCS.

 This is actually a wonderful place to be stuck in.  The doctors, nurses, aides, are skilled, friendly, just all around wonderful people. They are always going out of their way to help, encourage and comfort.

 The layout  of this part of the building (the 5th floor) is amazing.  The patient rooms are all on the outside of the building with large picture windows and spectacular views of either the Salt Lake Valley or the foothills behind.  The doors exit into the hallway which is a large oval.  Patients can leave their rooms and start walking the hall, enjoying wonderful artwork on the walls (many donated by former patients).  On one end of the oval is a beautiful lobby with large windows displaying both the valley and the foothills behind the building.  The elevators are here with amazing marble walls of a unique color. The lobby itself is large with lots of room for families to gather, patients to sit and enjoy the view, a family kitchen with vending machines, microwave, and refrigerator where families can store food.  It is just there to be used, no one to ask, just a request to label items with the patients room number. 

The oval is exactly 1/12th of a mile.  I have heard it referred to by patients has the "Huntsman Highway" and by nurses as the "Greyhound Express", not a bad name because most of us walkers are gray!  Patients encourage each other and sometimes chat as they see people go by.  After all, we all have a lot in common!  The newer patients are obviously struggling, pushing their IV racks and catheter tubes with them (that was me for the first 3 weeks).  Now I am (relatively speaking) out of place with my bathrobe from home and the ability to walk unassisted typically four laps each time I go out. I figure I have averaged a mile a day for the last two days.

The inside area of this oval has a variety of rooms used by nurses and doctors for all of their tasks.  Closer to the lobby their is also a restroom, shower, and laundry area for families, all available for use as needed without any need to involve the staff. 

 It is hard to imagine a more perfectly designed treatment center for cancer patients than this, the Huntsman Cancer Center. I'm glad that for the last four days at least I have really been strong enough to enjoy it and observe how smoothly it all comes together. If I could get my appetite and strength back it would be like  a luxury hotel vacation!

An interesting note for those of you who knew me in my early post high school days:  Most of the rooms have brass plates with the names of donors who I assume contributed to their construction in significant ways. The first  room I stayed in  was donated by Harris Simmons, and their is another from his brother David (their wives are also named, of course, but I can't remember their names).  It is interesting that the little brothers of my old girlfriend Liza would have ended up blessing my life 40 years later. 

I hope all of you are well.  Thanks again for all of your prayers, interest and compassion.  It is appreciated on a level impossible to express.  

Love to you all,

Tom  

Happy New Year!!

   The new year is starting out well after a wonderful family party last night doing our pull presents to wrap up the Christmas season.  I woke up feeling better than ever!  Docs have lifted all food restrictions so breakfast was a feast, including fresh blueberries, Esther's favorite treat. (See Blueberries for Sal)

No clear signs of solving the leak puzzle but I'm feeling better than ever, even to the point of playing songs for the nurses, especially about Mary, my first nurse. There's something about Mary... Walking a lot more. Still on antibiotics in IV, Diltiazam for heart and other binding agents for phosphorus.  Co-authored by Tom and Ruth Ann