Thursday, December 31, 2015

Goodbye 2015

Here's to a year of drama-free health and peace on the home front.

2016 is shaping up to be a good year, starting with Allison's wedding.

Good bye and good riddance 2015.

Tuesday, December 22, 2015

A visit to the doctor

Today, I had the pleasure of seeing Dr. Volz. I say pleasure because it wasn't bad news and he's a nice guy.

He did a cystoscopy, but doesn't have the monitor in the office yet, so I didn't get to watch. He said he still sees signs of healing, some redness, a scar, and I don't remember what he said about the crepe paper type stuff that was in there. No sign of any kind of regrowth of the tumor.

I stopped Myrbetriq a couple weeks ago and took him my unopened bottles that I had. He was quite happy to get them. I'll check to see if I still have VESIcare in unopened containers. If so, I will take him those because I am stopping it.

Overall, everything is healing and the tincture of time is still my friend. I'll see him again in 4 months for the same merry-go-round.

Saturday, December 5, 2015

Wowsers!

I slept 6 hours before I had to get up for the bathroom last night. Pretty damned phenomenal. I'm hoping this is the beginning of something good.

I ushered at the theater today and it was fun to be out and not having to worry about going to the bathroom. I am beginning to believe I'm healing.

Wednesday, December 2, 2015

Bladder up

Time to catch up a little bit. My blood sugar is doing very well. It's 100% related to what I eat and I'm doing a pretty good job of keeping it where it should be.

Sleep is improving. Sort of. I have had issues with a numb thigh for a long time; it's worse if I gain weight. Years and years ago, my doctor said it was probably related to sciatica and to keep up the exercising and weight loss. It has reared its ugly head again recently and sometimes goes down to the outside of my right leg below the knee. And along with that is a restless leg thing, very occasionally. That kept me up one night. But that has nothing to do with the bladder.

I am getting up one or two times a night max. The second time is usually around 6ish or so. That's not so bad. I have yet to sleep more than 4 hours at a time except once or twice.

Last week, I stopped the Myrbetriq. I am still taking the VesiCare. Dr. Volz had said to stop one if they seemed to be keeping the frequency under control.

As for what's happening in the bathroom, I still have discomfort at the end of the stream 100% of the time. It can range from a 1/2 on the pain scale to a 3-4. I'm thinking that means I still have something going on in there.

Not medical at all, but the house is decorated for Christmas now. Yahoo!

Friday, November 20, 2015

The stories of my tattoos

It started with wanting to mark and rejoice in the passage of time.

When I turned 40, I wanted to do something for myself to mark the passage of time and the transition to what I considered to be the true beginning of 'old.' I was in San Antonio with friends and saw a tattoo shop, asked them to stop, and decided right then and there to get a small blue bird tattoo on the inside of my right ankle. Deed done!

About a year later, Richard and I split up and eventually divorced, but several years after that, we reconciled and remarried.

When I was 50, I was in Phoenix and found a shop, and an apprentice and I drew out an ivy design to go around the bird. The ivy tattoo is not connected at the top or the bottom so the bird is still free to move around without being caged in, but it has a home now. The ivy was in celebration of my birthday and remarriage.

I started planning my tattoo for my 60th birthday and got Meredith and Mike involved in the drawing. I wanted a small body of water with a drop of water causing a rippling outward, like a drop of knowledge or experience sent out to all in its wake, and a sunrise behind it. Once again in Phoenix, 5 years early at age 55, I looked for an artist and took my drawing, and now the image is on the inside of my left ankle. When it healed, it looked a little like a blue swirl birthday cake, so I found a shop in Virginia Beach and had the water worked on. It looks much better and I am happy to have it permanently on my skin.

The summer I turned 60, I was fairly ill and unable to travel and didn't have the energy to get another tattoo, but I did start thinking about it. I wanted something really special this time. I decided to take a breath and honor my mother. I never gave her the respect she deserved. Her life story is very complicated and we had a few runins that just were too much for mother/daughter. In the last three years of her life, she was slowly sinking into dementia and I learned a lot about her life, things I didn't know about. She straight up told me she didn't want to get married and have "all these children," and it was obvious she had been homesick for Austria for god knows how long. She as in a country she wanted to leave, married to a man she didn't really want to be with, worked full time, and there was so much she had to tell. There are more reasons than I can count for honoring her with my new tattoo. And so, I asked my brother to draw a simple edelweiss picture for me. I settled on a double flower image he drew. Edelweiss is synonymous with Austria and I now have my most beautiful tattoo on the inside of my right arm to always remember and smile. No one knew the dementia mom like I did as I spent untold hours with her moving, needing medical care and transportation, and just visiting or going for a ride. I really knew her the last three years, but those were broken years. I now wear hers and my heritage proudly.

I don't know if I'll get any more tattoos. Will I be around at 70 to do it again? Who knows. Winnie watched the edelweiss tattoo being done and helped by providing a color reference on her phone for the artist to refer to. I hope we're both around to do it as a team again.

Thursday, November 19, 2015

MRI done

And why did I have an MRI of my head?

Balance issues (for which I went to physical therapy), a bit of trembling, hard time finding words, frustration - all related to sleep deprivation.

Sleep deprivation - Sleeping 1/2 hour at a time for months, extending to 1 hour at a time, and now, getting up 1-3 times a night. Napping during the day. No restorative sleep. All related to having to get up to go to the bathroom.

Frequency - Related to the allergy to mitomycin and the damage done to the bladder, with left over strands and tissue still hanging out.

Allergy - Requiring a second surgery August 27 to remove inflammation related to allergy to mitomycin. The first consideration of a possible allergy wasn't mentioned until July 30.

Mitomycin - Instilled post TURBT on June 18.

All of the goofy complications could have been possibly minimized had the allergy been discovered sooner. But Dr. Burgess didn't take me seriously at the time.

Now I wait.

Wednesday, November 11, 2015

Busy time in Phoenix

Health stuff first - Frequency is a little more than a normal person and I'm getting up two to three times a night. No strands yesterday or today, but the day before that, there were a few. Today, though, I had a painful pee, which reminded me of the ones of old. It did not repeat, for which I'm thankful. Whew.

Today was a fun day. I got my happy 60th birthday tattoo. I think I love it.

It has to heal and the colors have to mellow, but it's just about perfect. Edelweiss to honor my mom and her Austrian heritage.

Wish for no more painful pees, please.

Tuesday, November 10, 2015

Purty good day

Other than increased frequency, probably affected by intake of water, body stuff was good today. A nice rebound from the icky day yesterday.

We hit Casino Arizona for some fun. Both of us took a certain amount of money in and left everything else at home. Somehow, and it's about time, Winnie's and my luck were switched and she was the big winner with me being the one that left busted. It didn't matter to me about the spending all my dough; we had fun.

There was no nap today and I think I just hit the wall. I'm heading for bed and some reading.

Sunday, November 8, 2015

Teeny tiny setback

FBS 109.  Amazing.

I was up every hour last night. I'm not sure why. Drinking too much? Pain medication? Strands that I saw earlier continuing to try to come out? Who knows. I just know it will make today an air-headed me day. Since in Phoenix, I've been getting up once or twice a night. At about 5:30 this morning, I almost threw in the towel, but did get a little more sleep. I hope to have a better night tonight.


Friday, November 6, 2015

Relaxing

First the medical crap - I still am going to the bathroom more than the average person, but it's not so bad. I got up four times last night, but I had a couple DDPs and water in the evening, so that could have been the catalyst. I'm sleeping like a champ between getting up times, though. I am napping and happy about the quality of sleep I'm getting.

I'm doing a whole lot of nothing. Tomorrow, I will be up to 8 back and forths on the patio. Every day, I add one back and forth. I'm feeling confident in my walking. I'm also feeling a bit more confident in my conversation ability. I lose a few words here and there and stringing together a sentence is not always the easiest thing to do, but part of that is a function of being 60. I don't think that everything going on with me is sleep deprivation related, but most of  it is. I will find my balance.

The PT said I needed confidence. I'm getting that every day.

What I am doing most is relaxing. I've cooked the past two nights, both very healthy meals. This trip may be the medicine I needed to bounce back a bit more than I would have with my regular routine.

I am not rushed for anything.

We're thinking about things we want to do when Winnie is off. She works Friday and then is off until I leave on the 16th.

All in all, I'm in a very good space and though there are still minute issues to heal, the majority of the physical stuff is coming along. I suspect I'll be sleeping through the night in nothing flat.

Wednesday, November 4, 2015

Brain farts

Master plan while in Phoenix is to minimize external distractions when I can. Music and television are off while I'm working. I am walking the patio a certain number of lengths adding one each day. It was back and forth 5 yesterday and 6 today. I'm focusing on eating mostly properly.

I only got up once last night and daytime frequency is almost in line with the amount of liquid taken in. My mouth is extremely dry due to the Myrbetriq and VESIcare, but it's a small price to pay.

The first week I am here, Winnie is working. I will take full advantage of the quiet time. I will nap if the spirit moves me. And I will walk every day.

Almost zero pain on urinating when I drink water, so am keeping that habit going. Overall, I'm so ready to get myself back and to get a little in shape so my conditioning and confidence in body movement improve. In other words, I'm healing. It's time!

Tuesday, November 3, 2015

I fleed, I flied, I flew

Yesterday was whirlwind day, Got up to a decent blood sugar, got my bags packed, took a shower, worked a quick shift, and went to the bathroom a lot (nerves!). At the Richmond airport, I did visit the ladies because I knew I was going to be on a very small plane. All seats for this jaunt are near bathrooms, but who likes to do that? I did the same in DC, preemptive pees :) Unfortunately, I also experienced a blood sugar low at the airport due to the no carb lunch I had in Richmond. My mistake. I bought a ginger ale and M&Ms, and in an hour, I was fine. I only made 2 trips to the loo on the 4+ hour flight to Phoenix. Not bad. I was pretty tired, but we stayed up and talked a while, and I bid my leave at about 10ish. I did get up 4 times last night, which I found to be odd here in desert land! Very little pain, if any.

151 fasting this morning. not great. Not bad.

I'll be working and taking it easy today. I'm exhausted and well, that's no fun. I walked a lot yesterday and never considered getting a cart or a wheelchair. It felt good to be up and moving around.


Friday, October 30, 2015

Pre travel catch up

At PT Wednesday, we decided I'd come back one more time after the MRI (closer to Thanksgiving). Their whole goal, I think, has been to build my confidence. I'm moving more overall, so my pre June 18 activity level is coming back. Stamina will come.

My daytime frequency is still probably more than the average person and there is still occasional pain at the end of the stream, but it's rarely enough to give me the shivers all the way through my body. I only had one of those today. The average at night seems to still be every 3 to 5 hours. What an improvement!

I called both Dr. Burgess' and Dr. Volz' offices to find out how to get a copy of my records. I'll have to go by Dr. Burgess' office when I return from Phoenix and fill out forms. There will be a charge, but isn't' there always?

I'd really like to get real sleep and it's coming. January's cystoscopy will tell more of the tale of what the healing level is inside.

All in all, I believe the mayhem part of the cancer, allergy to mitomycin, inflammation, extra surgery, and resultant deconditioning leading to some stumbling and minor neurological problems is winding down. My hand tremors are almost gone. I'm better able to put sentences together when having a conversation.

My main question still remains - if the allergy had been discovered (i.e., if Dr. Burgess had listened to me about the severity of pain I was experiencing) earlier, would the outcome be different?

This weekend will be getting ready to fly on Monday, including a bit of cleaning, laundry, step work (PT exercises) and who knows what else.

Tuesday, October 27, 2015

Feeling like me?

I woke up feeling like me this morning. What's up with that? I did get up once, but I think I had another 5-hour stretch of sleep. I definitely need more of that.

Confidence. Since I started taking my life back a few weeks ago, it's been a slow process. The physical therapy people say I need to build my confidence back up. I agree. I do balance exercises on the deck and some days are better than others. I did stumble once in PT yesterday, so it's been witnessed at least once. I think it'll get better.

I also woke up with a low blood sugar again. I'm not really snacking as much at night. That will also help with weight loss.

What have I changed? I added exercise back into my life two weeks ago. I've been to either the pool or PT three days a week. Next week, I am hoping to do some walking. Winnie's neighborhood is set up for walking with the sidewalks.

Daytime frequency is coming into a normal range and I'm happy about that too. When I'm sleeping through the night, I'll drop the Myrbetriq and keep taking the VESIcare.

It's now closing in on work time. I've been sewing and doing laundry, and am thinking of cleaning a little later. We'll see!

My 2 hopes:

  1. The MRI is clear.
  2. Sleep deprivation is the cause of the weird and dissipating neurological symptoms.

Monday, October 26, 2015

Quick catch up

Friday, I drove to Raleigh, NC, and stopped 3 times. That's damned near normal for me. I was never in a panic because there are plenty of rest stops and fast food places. The same frequency on the way home.  It was amazing to get out and have lunch with friends, and amazing not to worry about peeing every 10 minutes. The Myrbetriq and VESIcare are doing their job. I do still have a little bit of perineal pain when going, but it's not that bad. I do see strands from time to time.

Last night, I slept about 5 hours before I had to get up and that was amazing too.

I know I'm healing. I'm going to physical therapy in just a bit. I know my balance is getting better and I'm not experiencing tremors. I still haven't started the mysoline. I'm not real crazy about the side effects.

So there's the quick rundown. The body (and therefore the mind) is getting better. Yay!

Thursday, October 22, 2015

A stay home day

I only got up twice last night! I think the first one was 4 hours into the night and that's amazing. My daytime frequency is getting to be downright normal. I do still have an odd pain from the urethra to the shoulders at the end of the flow, but it's a 1-3, not the 5-10 it used to be. My decision to take my life back was a good one.

I thought about cleaning today, but that's as far as that went. I'm always picking things up here and there, and did some sewing. Dinner was super simple - grilled cheese and soup. I had tomato soup. I usually warm up tomato juice in lieu of soup. As I was eating the soup, it took me about a nanosecond to realize i prefer the juice to the soup. Lesson learned!

Balance exercises were done. I'll be re-adding weights again in the next few days. There is new research out there that correlates improvement in type 2 diabetes with simple weights.

I will not do everything overnight, but I do want to continue with small changes that benefit me.

I'm done being sick.

Oh, MRI is scheduled for 11/19.

Wednesday, October 21, 2015

PT

Physical therapy today was productive. Kristina told me I walk very cautiously and that the balance issues I was experiencing seem to be easing up as I did well on all the testing. Many of the things we did, we also do at the pool, so it's nice to know I'm making the right strides in that regard. We talked at length about the role that confidence is playing and that I will get that back in no time. There was nothing we talked about that I didn't agree with.

I have yet to hear from Sentara regarding scheduling the MRI. I need to get that done soon as I am leaving November 2.

Frequency has been relatively normal today. I did get up twice last night (two 3-hour sleep episodes). Both of those things are good because sleep deprivation is the cause of new weird balance, coordination symptoms.

One tiny tumor. That was the easy part. The mitoycin inserted into the bladder post surgery was the beginning of the summer from hell that is extending into the fall of hell. I'm seeing some progress. I am going to screw up my courage and go ask for medical records tomorrow. My story is long from over.

Tuesday, October 20, 2015

Tuesday is not very exciting

I've been holding off for about a half hour to an hour all day between bathroom stops. I believe the Myrbetriq and VESIcare are helping, but man, is my mouth dry. I still have a minor amount or perineal pain. I'm sure that will improve soon too.

I had my regular dental checkup today and the summer of pee and medications has not affected my gums. I was afraid that all the drugs and procedures, and the dreaded sleep deprivation would have done some damage. Whew.

Last night was a two-time up.

Tremors are almost nonexistent today, which is great.  I go to my first balance training session tomorrow. that should also improve organically as sleep is restored.

Yep, I'm taking my life back.

Monday, October 19, 2015

Just a little pissed

It sort of pisses me off that I have had to see a neurologist, will have to have an MRI and attend balance training PT all due to sleep deprivation, caused by needing to get up every 5-30 minutes all night long until the last week or so, related to the allergic reaction to the mitomycin C that wasn't diagnosed until almost 2 months after onset. It seems to me that a lot of what I am and have experienced  this summer could have been avoided if the source of my extreme pain had been investigated when it was reported and not later when I requested (and was hand slapped for doing so) another cystoscopy. Emergency room physician, family practice, urologist, neurologist, physical therapist - I've had enough.

I'm just angry right now. I've kept a good attitude and will continue to do so, but a small bladder papillary tumor should not have resulted in all of this mayhem.

Saturday, October 17, 2015

Saturday of 'let's get stuff done?"

Up three times last night, which is now out of the norm. Still better than every 15 minutes!

I just organized all the pharmacy receipts from this summer. I can't believe how much stuff has come from there and gone into mostly me. I need to get off of some of these drugs instead of adding more.

Fasting blood sugar was meh - 158.

Here we go - going to try to make it an okay day.

Friday, October 16, 2015

Neuro everything

I saw the neurologist today for an evaluation (slept 3-hour blocks last night) and one thing kept rising to the top - sleep deprivation.

Consider that I have not had a full night's sleep since June 18, 2015. For most of the time following, I got up every 15 minutes to 1 hour at the most. I nap, but it is not restorative.

At any rate, the stumbling, etc., is most likely yet another after effect of the surgeries and the lack of diagnosing the allergy sooner, meaning my deprivation has lasted a lot longer than it ever should have.

The handwriting will probably improve over time. I will see a physical therapist for balance training and exercise program, I will take a low dose of a drug (mysoline?) to assist with the trembling, and I will have an MRI just to rule out something drastic.



That's my anthem for today. Elvin Bishop sings it better than I can say it.

Thursday, October 15, 2015

A new adventure begins?

On August 27, 2015, I had to sign a consent form before the second bladder surgery. I was unable to write my name. It was worse than squiggles. The anesthesiologist asked me if that was normal or why I thought it happened. I had witnesses, so they knew the marks that were made were made by me.

Occasionally, and more recently, I stumble and lose balance.

Today, I had to sign in at Dr. Hoag's office and couldn't sign my name again. I told the gal at the desk that I wanted her to make sure she saw me doing it because it wasn't anything like my signature should be. I was at the office to talk about the balance and handwriting, and the loss of words (which I chalk up to aging and fatigue). The fatigue is related to still not sleeping well with regard to the bladder problem (which gets better every day).

Now I get to see a frickin neurologist. Dr. Hoag doesn't like the constellation of symptoms. I told him I had diagnosed myself with MS and he chuckled and said that's not what it was, but it needs to be figured out.

I did tell him that my hand sewing is still possible, but I have to try a little harder and be a little more meticulous. I also shared that I did a word puzzle this morning and tried very hard to make the letters correctly, but it was not always possible.

Heavy sigh for today.

Wednesday, October 14, 2015

Trails and tributaries (sounds better than trials and tribulations, doesn't it?)

My blood sugar is behaving like crazy. I'm doing something right on that end. Food and exercise are the key with that one. Whoo hoo.

I made it through 95% of class today before I had to excuse myself. It was almost an hour that I'm not letting it bother me. I am in constant motion for an hour and that's what counts. That and the fact that I got my ass up and went.

I got up once last night and it was no big deal. I'm trying to drink more water. I sort of have let that go by the wayside. No mo. It's at least 2 bottles a day again.

And then there's balance. My balance is not bad, but it's not normal. I keep thinking it's better, but it's not. As a precautionary measure, I'm going to see Dr. H tomorrow to talk about it. I don't want to deal with a bunch of testing till February, but there has to be something I can do to improve it between now and then. Before my second surgery at the end of August, I literally could not write. I can write now, but it's pretty bad.

I want everything fixed. I feel like I'm well, but my 60-year-old body is pissing me off.

Tuesday, October 13, 2015

Things

Sleep at night is interrupted only once now. Go figure! Daytime is variable, but sometimes I have hour or so stretches. Having said that, I went back to my aquatics exercise class yesterday and made it the whole hour. I cannot explain in words how wonderful that felt. I'm pretty out of shape so I'm starting with the arthritis class and when I return from Phoenix, I'll try to get back to the next level class at 10 a.m. My hope is to do some walking in Phoenix. I just need to keep moving to feel good. I know that's my truth and I need to respect it.

Allison called and I answered the phone and heard, "FUCKIN A!" and then I think she realized I had answered and said, "I got a 5K scholarship!" I'll definitely let her have a bye on the fuckin A. :) Proud of her!

Abbey, well she's another story. We got back from our post office ride today and when I opened the back of the Jeep, rather than run for the front door, she ran to Richard's shed. Argh. I had her collar and leash in my hand, so a lot of good they did. I whistled, offered biskies, walked to Charlie's, and looked around the front of the shed. No dog. I gave up and started walking back to the house and here she comes running down the driveway from the shed and to the front door. There must have been something back there she wanted. Her collar goes back on today and that's that.

My blood sugars have been amazing. It's fantastic what one can improve when there's not a big thing weighing on your mind.

I did give Dr. Volz' office a call. I'm seeing some pink tinged stuff on the toilet paper once in a while. I just want to make sure that's okay.

Sunday, October 11, 2015

Good numbers are a good thing

Frequency and urgency both were better today. I played the "hold it" game a few times and made it over an hour both times. That means there is no reason to avoid the pool at all. And what that means is I'm suiting up in the a.m. and getting the hell out of dodge and into the Rec Center.

I still am getting up at night once or twice, but it's so insignificant that I don't even look at the clock anymore. I just get up, go, and go back to sleep. A much more almost normal way to get rest. I still need a nap, but even that's not as dreadful as it was.

There's less pain on urination. The worst is up to a 3, but it dissipates quickly.

Now for my other numbers. My blood sugar is in a really good range today. From a fasting that was low (for me) to even lower numbers as the day went on and better eating choices were made.

I have had no balance problems today and that makes me happy.

Allison's cat had a swollen eye yesterday and she was very upset. I got a text this morning that George's eye was better, so she can breathe easy for a day. She's had a tough week. I feel for her, but there's not much I can do to help other than be a mom.

My wish for the remainder of the day includes a good 2 hours post dinner blood sugar and a good night's sleep. That could happen!

Dinner was a bacon, egg, cheese, and avocado sandwich. Yum.

Saturday, October 10, 2015

Full frontal attack

Now that my bladder issues are seeming to finally be healing (got up 2 times last night, sigh), I want to really attack the diabetes that will never heal, but can be controlled. My A1c has been down the last two times it as checked, and I want it down even lower. I've re-added zucchini and apples to my diet on an almost daily and am improving my other choices too.

This does not mean I will not be focusing on bladder health too. When I have pain with urination, I can almost guarantee that there are strands of ick coming out. I think that's a good thing. Where else is it going to go? I'd rather it come out than stay stuck inside causing problems.

I'm back to improving that which I can and maintaining that which I can't. I will not give in.

Wednesday, October 7, 2015

Days, they do improve

Richard mentioned, and I agree, that Dr. Volz has been treating me as a person and not just a bladder patient. That's not to say I'm not a bladder patient, but humans are much more than their conditions. As a result, the last few days to week have been filled with a more human me. I'm selling stuff on eBay, finishing old sewing projects, going out with the dog more, and well, I just feel more like me.

I still have frequency during the day, but it's less and less painful every day.

I don't want to jinx anything, but I think I'm healing.

Allison's cat, George, went to the kitty oncologist today and was apparently told there's not much that can be done, and that George can be made more comfortable with some kind of compounded med, and that it could be weeks or a couple months. I feel such pain for my daughter. This is the first pet she's ever had that was hers and hers alone, and they've been very close.

Abbey hasn't licked diddly today, so I think she's feeling pretty much good to go.

Overall, life is coming around and I'm feeling less tied to the house. No stumbling today either. Whew. I want a shitload of well time before I grab hold of some whacky thing again.

Tuesday, October 6, 2015

3-1/2

That's the number of hours I spent sleeping last night without having to get up! I still needed a short nap today, but it was pretty amazing to see the clock was almost 4 hours later than when I went to bed.

Daytime frequency is about 15 minutes. Not bad.

I figured out my stumbling. I had taken some Valium a couple days ago, probably more than I should have, and it had a lasting effect of me stumbling, walking weird, and not feeling like I had much of a sense of balance. I've added balance exercises to my daily routine, but the farther I get from the Valium taking, the less the weird balance is. I recalled that the Myrbetriq and VESIcare are being taken to relax my bladder, and I wondered if they had a relaxing effect on other muscles/tissues as well. Suffice it to say, I threw the Valium away. I'm taking a lot of drugs right now and don't need to add anything that's not necessary. I'm not taking the ibuprofen anymore because it tended to make my hand tremble.

I've spent a lot of today listing things on eBay. I'd like to make a little money for my trip to Phoenix in November.

Abbey is doing an amazing job not licking or self-injuring. .She hasn't worn her cone of shame for days.

George, Allison's cat, has some type of cancer, They're seeing a pet oncologist tomorrow for an opinion. We're all hoping that this isn't the end for George, but I think she's prepared if it is.

Oh, pain level - 1-5 on urination and that dissipates to a 0 in no time at all.

Life's getting a little easier to live. I go back to the pool in 6 days.

Richard mentioned he was worried about the way I was walking, as in walking like I did before knee replacement surgery, but today, he said I was really back to normal.  I'm sure it was the Valium. I will continue to be careful and bump up the exercise, and lord willing the the creek don't rise, I'll get some sleep.

Monday, October 5, 2015

The summer of pee

My whole summer has been consumed with pee - bladder tumor, surgery, chemo allergy, more surgery, peeing every 5 minutes during the day and every 15 minutes at night, and major frustration that my doctor wasn't listening or hearing what I was saying when I knew there was something dreadfully wrong. I got so sick of hearing "normal healing." I was nonplussed about being told it wasn't my decision to make when I suggested a cystoscopy at the height of my pain periods. I was so tired of pain that no one other than my regular family doctor took seriously. I hate that I know where every bathroom is within a certain number of miles and having to plan even the shortest trip outside the house.

I'm starting to see some improvement. I slept 3-1/2 hours last night and 5 the night before. I still need naps to function and find myself falling asleep at the oddest times. What wakes me up? The need to pee.

I have had pain with every single pee since June 18, 2015. It's better, but it is still there. The degree of pain is variable, but tolerable.

My summer of pee has been a major pain in the ass. I'm ready for autumn to be a more pleasurable season. And I think it will be.

I wouldn't wish a summer of pee on my worst enemy.


Saturday, October 3, 2015

Another pretty good night

I think I had a 3-1/2 hour sleep. The rest up getting was about an hour apart; The daytime frequency has been stretching out some too. Soon, I won't have to take naps! Lastly, the pain on urination is still there about the same. It will dissipate, I'm sure.

Balance - it's getting weird.I'm doing exercises  to help.

Tired. bedtime;

Friday, October 2, 2015

Wow!

Dr. Volz just called me. He called me. Not a nurse. Not an aide. Not an office person. He called me.

He had put me on Myrbetric and VESIcare for bladder relaxation, which may help with the frequency. I told him I think I slept 5 hours last night and he was as excited about that as I was.

During my visit with him on 9/25, he told me he was going to talk to a colleague as he doesn't see this type of reaction after a TURBT often. He did talk to the colleague and then talked to yet another bladder specialist at MD Anderson. The plan is to continue conservative treatment like we're doing and when I see him in January for a look inside, the progress will tell the tale on what comes next.  First up would be a long course of steroids. I'm not sure I want to do that, but I will if it's necessary. How can I not trust the three different opinions? If the papillary tumor returns, it will be removed and treated after with antibiotics for healing. No more mitomycin C for me.

This is twice now that a cinder block has been lifted off my back. This week I have slept better, been for a walk, have cooked, and in general, have a much better outlook on life.

Did I mentioned my doctor called me?

(Not Dr. Volz, but you get the idea.)
(Dr. Volz, but not on the phone.)


Wednesday, September 30, 2015

Not a bad day

Frequency is not as immediate today; it could be 5 minutes or it could be an hour. I went for a walk with the dog without having any incidents and then later, I went to the store and didn't have to visit the bathroom. I'm hopeful that the two-hour stretches of sleep will continue.

I've done a little reading on interstitial cystitis.  I don't have that, but the treatment is bladder preserving - exercise, eat properly without high acid foods, drinking water, and general good health habits. If the improvement continues, I may be able to tolerate exercising at the pool by next week. Until then, I'll walk the dog between raindrops.

We may be having a hurricane in the next couple days, but it should be passed by the time I'm ready for the pool.

Overall, not a bad day. Hope reigns supreme.

Official results of the CT

CT UROGRAM 

Impression

IMPRESSION:
1. Bladder wall thickening with indistinctness consistent with infectious or inflammatory cystitis given the clinical history. No discrete mass is identified. No bladder perforation.
2. No suspicious mass identified along the upper urinary tract.
3. No hydroureteronephrosis. No urinary tract stone disease.
4. No evidence of metastatic disease to the abdomen or pelvis.
5. Hepatic steatosis.
6. Stable right lower lobe lung nodule which is considered benign by CT criteria.

Component Results

There is no component information for this result.

General Information

Collected:
09/23/2015 5:45 PM
Resulted:
09/23/2015 6:04 PM
Ordered By:
Lawrence R Volz, MD
Result Status:
Final result

A start

Last night, I had a couple of almost two-hour periods of sleep. I'd say that's cause for celebration.

Today, it's iffy. That's okay, sleep is the big thing I'm aiming for right now.

One other thing I want back in my life is exercise. I put on my tennies, leashed up the dog, and took about a 25-minute stroll through the woods. Not bad for my first time out. Abbey appreciated it. Once the daytime pee is under some kind of control, it's back to the pool for sure.

Nary an ill feeling to share. I know my bladder is still full of icky stuff and don't know the future of said icky stuff, but for today, I took a step (literally) to me. I'd call that a good morning.

Tuesday, September 29, 2015

Onward

On the pee front, frequency is still and issue, and there is still pain at the end of the flow, but it doesn't linger as long as it was. I may be seeing some improvement even with all the drinking during the day. It could be natural or it could be the VESIcare or Myrbetric. I expect more improvement as those two drugs do their thing with relaxing the bladder.

With very little exception, I'm trending back to paleo/primal eating. It's better for my diabetes and my overall well being. As I continue to get more sleep, my impetus to work on healthier intake and exercise increases.

I've also made the decision to start the arthritis class at the Rec Center Pool to get back to square one at the pool. That may take a week or two as it relates to my frequency thing.

I am pumped to be making positive plans. There is no estimate of time for the inflammation to dissipate, but unless I feel worse, I won't be seeing Dr. Volz until January. We can only hope for goodness.

Monday, September 28, 2015

Sleep, beautiful sleep

I got a call from Dr. Volz' office. There is no further infection, so that's a good thing. Inflammation is another story, but that's the part that will take time to dissipate.

My new Facebook picture. 

I still got up every hour last night and have been vacillating between every 5 minutes and a half hour today between bathroom visits. Richard encouraged me to take a nap when he came home; I think he could tell I was feeling pretty zombieish. I slept two hours with no pee breaks. I think I could have slept the night through, but that'll have to wait.

My tiny concern is my balance is a little off. I'm thinking of signing up for tai chi to help with that. Before that, I'll just need to get out and walk the dog a little bit. There is no one but me who can get started on the road back to movement and exercise.

Now that I know that my bladder is on the mend, it's time.

Friday, September 25, 2015

A much needed very good day

First of all, it's Stefanie's and mom's birthday. I had arranged to take Stefanie out to lunch and as an homage to mom, we ordered Havarti panini sandwiches. They were absolutely delicious. We had great conversation and agreed to let bygones be bygones and be better sisters to one another. I couldn't have asked for a better outing. My best to both of them on their day.

I got up early after a night of one-hour stretches of sleep. The dog and I did our thing and I showered and left for Portsmouth to see Dr. Volz, which would include going over the CT with contrast done on Wednesday and a cystoscopy to be done today.

I had a few questions for the doctor, one of which was - would earlier diagnosis of the allergy have changed the course of events. He responded that he would have explored outside the bladder sooner. I then asked if I were fixable and he said he was confident that I was.

We looked at the CT with contrast and all the surrounding bladder supporting organs (kidneys, etc.) looked good. The allergy did not travel outside the bladder.

I asked to be able to watch the cystoscopy. There is still quite a bit of inflammation and sheer strands everywhere.

I asked about a partial cystectomy and he assured me that he would not "touch your bladder with  a 10' pole at this time," for fear of doing more damage to the weakened tissue. His approach would be conservative.  He explained that Myrbetric and VESIcare would relax the bladder over time. He mentioned continued hydration. He took the time to explain they why of taking the medication. He also asked me to back down on the iburpofen dose to avoid further damage. I will see him again in January for another cystectomy and is going to consult with one of is partners who has more experience with bladder cancer than he does. I gave him the timeout hand movement and asked directly if I had cancer and he said no.

I left feeling like a million bucks. Yes, there will still be frequency and minor pain, but it's slowly going to heal and the frequency should slow, which means a whole night's sleep again Domesday.

I'm sure there will be more to the story, but I'm willing to deal with the time issue.

And do the day did go.

Thursday, September 24, 2015

It's the allergy, not the cancer, but.....

I sent this picture to my nephew today. He had a particularly tough year with a rare cancer, plus he's ex-Navy, so I thought it suited him. He's doing well now and waiting for a reconstructive surgery. Love him dearly and it was painful watching him go through his ups and downs.

His response was, "my next tattoo."  Gave me a nice grin.

I've taken a much needed day to do a whole lot of nothing. Tom came by after work to pick up a piece of mail and shoot the breeze for a while. It was really nice to just sit outside and talk for a while.

I want to try to get to bed at a decent hour tonight. Even though I only sleep in one hour stretches, I still need to get enough rest to get up early and head for Portsmouth. I'm a bit of a bundle of nerves since there may be some answers to the "what," "why," and "what's next" questions. I am remaining optimistically hopeful.

Frequency was tampered a bit today with ibuprofen. I'm not keen on taking high doses for a long period of time, but right now, that's not my top concern.

And so it goes.

Warrior thinking

I posted this picture on Facebook today as my profile picture to boost my inner warrior feeling. Truth be told, I'm a touch scared. I've mentioned before how I suspect I'm going to have to have a portion of my bladder removed. The deeper fear is that the bladder papillary tumor was metastasized from elsewhere. Of course, neither of those things are probably true. That's how a warrior thinks, right?

I do allow myself some "what if?" thinking. I believe it would be normal not to do that once in a while.

After the CT with IV contrast yesterday, I was instructed not to take metformin for 48 hours. I emailed Dr. Knudsen (endocrinologist) and she reviewed my recent BUN and creatinine, and agrees that 48 hours is enough. I'll drink a lot of water to continue to flush the dye, and will restart it on Saturday. I'm ever amazed at how responsive she is to email questions. This is a whole new way of doctoring and super effective, in my opinion.

Richard continues to be out of town and that leaves me time to just be for a while. Today, especially is a be day; I have very few hours of work to do and plenty of sewing calling my name.

I found this last night on the internet. It sounds like responses from medical professionals are the norm for patients having pain after mitomyin instillation:

Mitomycin C into the bladder
If you have mitomycin C into your bladder, it only causes side effects in the area of the bladder. The bladder can feel inflamed and sore after the treatment, as though you have cystitis. You may feel that you need to pass urine more often than usual. There is a very small risk of damage to the bladder wall or a hole in the bladder wall. 

Tell your doctor or nurse straight away if you have any of the following effects

Severe abdominal (tummy) pain
Problems passing urine or can't pass it
Blood in your urine
You should wash your hands thoroughly after passing urine for a couple of days after having this treatment. If the urine touches your skin, the mitomycin C may cause a rash.

http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/mitomycin-c

Water under the bridge/over the falls, right?

We shall see what tomorrow brings. Today, I remain a warrior.

Wednesday, September 23, 2015

Scan be done

The paperwork I signed said "malignant neoplasm." Whoa! That took me aback. I am thinking that is what the CT is for - to look for stuff like that.

The IV dye is so weird. It sends a warm feeling down your body. I got two doses. It was explained to me that our bodies see it as waste and our kidneys work to break it down, which sends it through the ureters and into the bladder, thus giving them a good picture of the functional ability of the anatomical bits and pieces. The process was not difficult, but it was lengthy.

But, the CT scan with IV contrast is now done.

Tomorrow is a no doctor day with very few responsibilities. Then Friday is the drive to Portsmouth to see Dr. Volz, go through with the cystoscopy, and talk about what the CT showed.

There are so many possibilities in my head and I've chosen not to focus on them today. There will be time Friday to fret.


CT today

Sleep the same, up every hour.  I'd love to have a full night's sleep again some day.

I will be going for the CT with contrast today.

I know something is going on in there:

  • More residue/inflammation?
  • Damage enough to the bladder to require partial removal?
  • Damage outside the bladder due to the mitomycin?
  • Problems with ureters?
  • Metastasis of another cancer into the bladder?
  • Normal healing?
  • Something else altogether?
  • Even worse, nothing?
I won't have any answers until Friday's cystoscopy with Dr. Volz in Portsmouth. He should have results of today's scan. My hope is that whatever is going on, there can be a plan made to alleviate the pain, discomfort, frequency, and urgency. 

As I've mentioned before, I'm sort of tired of being broken and having my life altered to this extreme. I'm planning a lunch in NC with work friends, but I did have to tell them that everything depends on the outcome of these tests and potential followup plans. 

I will be taking ibuprofen again today to see if that helps with extending the frequency.

Tuesday, September 22, 2015

And so it goes

Every hour up last night. So far today, every 5-10 minutes. Just took some ibuprofen. If there's inflammation inside, the ibuprofen will extend that out to a half hour or so. The end of urination and perineal pain are about the same. It comes and goes rather than hanging around forever and a day.

Getting tired of me talking about pee yet? Lawd.

Abbey is back in the hat for the day. Caught her licking her front foot almost raw. Nope, not gonna get into the habit again. I need my dog healed. I missed giving her Zyrtec a couple of days. She's back on it and hopefully that will help again.

Richard leaves tomorrow for a few days, so I'll be on my own and have fewer responsibilities for a little while. I may schedule Thursday as a blob day as I have tests on Wednesday and Friday.

Time for a bottle of water.

Monday, September 21, 2015

Frequency better?

This is day 2 of taking the high dose ibuprofen again and I think the frequency issue is improving, leading me to believe there is still inflammation somewhere. We'll see what the testing shows this week.

Last night was a drug free night and was the usual - up every hour. I was able to get back to sleep, so that tells me that pain med, Valium, and Ambien don't really do much. I'm tired enough to get to sleep the first time and so far, am having no problems getting back to sleep with the hourly awakenings. I'm fine with that. The fewer drugs, the better.

Abbey is eating her back elbows again, so when I caught her earlier, the hat went on. It's off now, but I have a close eye on her. I took her out for some ball play and exercise, and now she's calming down a bit. I really want my dog to heal and stay that way.

As for pain, that has not changed. It's not unbearable and is just a part of everyday living now. I suspect that will dissipate as we hone in on a diagnosis and treatment. I still feel like there is something in there trying to come out.

And just for good measure - damn you mitomycin C and damn you Riverside Urology for not addressing my symptoms when I brought them to your attention. Whew, that felt pretty good.

Sunday, September 20, 2015

Worth a try

Up every hour last night. I need to write a book about all the different dreams one has before waking up to go to the bathroom in the middle of the night. So many glass walls. Last night one to remember was a place with a audience where you sat in a desk chair in front of a video game type of screen. You put in your quarter and the game seat becomes a toilet and the crowd urges you on. So frickin weird. I got a million of em.

Still having perineum pain and the urinary pain has not changed. So, today, I took ibuprofen again and thought it would be worth a try. Dr. Volz felt it wouldn't hurt. We'll see if it does any good. Any relief is good relief.

Blood sugar is still doing okay too. Go me!

The dog has decided her back "elbows" taste good again. Boo. Back to square one with her. Tight watchful eye and the "hat" if I catch her doing it. I don't want to lose ground with her.

The weird sensation when I pee: It feels like at the end of the stream there is something trying, without success, to come out. Could there be more inflamed tissue hanging out?

Saturday, September 19, 2015

What I'd like to say

I would like to say that I'm improving by leaps and bounds. Can't do it yet, though. The intensity of the pain on peeing is shorter in duration, but still hits a 5-6. Much better than the 10-14 of days gone by! I believe the antibiotics are helping a tiny bit, but they're not going to be the end all, as much as I would like them to be.

This will  be the week of diagnostic testing and something will show up and it will get fixed. The end, right?

I got more sleep today than a person should be allowed. It was all an hour at a time, but I don't care. I took a long nap this afternoon after sleeping till almost 11 this morning. What a slug. It felt amazing to be rested.

My blood sugar is coming back into range and that's a huge improvement. I told Dr. K that I'd make a concerted effort and I am.

That's the progress that ain't the progress. At least I'm in a good mood, eh?

Friday, September 18, 2015

TMI time - What my life has become, part 2

I rarely flush the toilet because our septic tank could never take the number of times I'd need to flush it. The old country phrase, "If it's yellow, let it mellow; if it's brown, flush it down" seems to fit.

I put toilet paper in the trash. It takes about a week to fill that trash bag.

I have bought myriad rolls of toilet paper. Every single time I go to the store, I buy toilet paper.

I clean the toilet (use primarily the downstairs one) with bleach now, and clean it often.

I've bought I can't count how many bottles of bleach and Lysol wipes.

I wear Poise pads. I run out of those often, so they're a must buy for most store trips. I always have an extra with me.

I'm like a toddler in that when I have to go, I have to go. I literally cannot wait.

If I go to a store, I make sure I know where the bathroom is. Most trips to the grocery store require two trips to the bathroom.

I haven't slept a night through since about June 21, 2015, give or take a day.

To go to my friend's pool party, I had to ask her ahead of time to have a hose available near the bushes so that I could go and wash off, then get back in the pool.

In order to promote healing, I drink a lot of water. Drinking a lot of water increases the need to urinate.

If I am out and about in a rural area, I come close to a panic if I don't know where there's a close bathroom.

I hurt every single day from my urethra to my shoulders in short spurts. It dissipates, but it's annoying.

I have days where I don't want to do anything but try to catch up on sleep. Guess what? Those naps are interrupted by needing to go to the bathroom.

I often become frustrated and flustered that things are not improving.

Pee is all I seem to have to talk about.

That is all for now. Just wanted a brain drain.

On a positive note, I do have hope. I know this is not forever.


Got out for a little bit today

Last night was another 1-hour stretch of sleep night. I'm almost getting used to it. That's not my idea of a good time. Today has been the typical 5-20 minutes between pees. The pain is not as bad. It's about a 5 when I go and tapers off to a 1ish at the baseline. I'm still taking the antibiotic and antiyeast medications. Macrobid and diflucan. That should help some if the bacteria and yeast that Dr. Volz found on culture is a part of the problem.

Sentara called and my CT with contrast is scheduled for 9/23 at 3 p.m. Specifically, it's a CT Urography with CT2 GE. Then 9/25, I have the cystoscopy with Dr. Volz in Portsmouth and then lunch with Stefanie.

I've had some things that needed to get to the post office, so today was the day. I didn't want to keep letting grass grow under my feet. I got Abbey in the Jeep and off we went. I chatted with Carol at the post office (and borrowed her bathroom) and a woman walked in and said, "There's a German shepherd out there driving a Jeep." Cracks me up. Every time I take her anywhere, she hops into the driver's seat until I get back. She enjoyed the ride and when we drove through at the pharmacy, they offered her a biscuit, which she took in no time at all.

It doesn't sound like much, but we got out of the house and that's that.

I got a little sewing done. My Bernina is back again, so I had to switch things out. I'm making pumpkin potholders for now. I have more Trick or Treat bag squares cut out, and those will be next. I'd really like to make myself a vest, but haven't had the desire to go through my fabric yet. I will. It's coming!

Oh, I called the tattoo guy, Aaron, at Sinful Skin, and made an appointment for November 11. My 60th birthday tattoo is going to happen.

Wish for me some sleep tonight!

Thursday, September 17, 2015

For my notes - Exact timeline presented to Dr. Volz on September 15, 2015 for his information

Donna Apperson

(757) 561-9013

5004 Fenton Mill Rd

Williamsburg, VA 23188

CC: Bladder tumor (papillary), TURBT, complications, second surgery, continued pain.

4/19/15

ER for blood in urine, CT scan fine

About 2 weeks later, met Dr. Burgess and set up US, which was fine

6/8

Cystoscopy with Dr. B, diagnosis of tumor

6/18

Surgery, routine TURBT, and mitomycin C instillation in recovery room

6/21

Exquisite pain with urination. End of day was crying with pain. Curious why starting in 3 days.

Started pyridium in case it was the spasms I heard so much about. Blood in urine. Small strands

of something.

6/22

Called Dr. B's office early a.m. Drinking water to try to help. Heard nothing. Called them at 1:30.

They suggested an urgent care or my regular doctor because their AC was out. I was already in

the car on the way to pick up an Rx at their office, which they were not going to be there for as it

turns out. I said to nurse, "do you mean there is nothing you can do to help me?" No response.

Called Dr. Hoag's office and they worked me in, prescribed pain meds and antibiotics just in

case. Told me to follow up with Dr. B.

"A night of essentially no sleep, pain that I've never felt before, and just having had surgery -

this concerned me."

Pain level down to 8 instead of 11 with pain medication.

6/23

Pain at 7-8 with residual of 5ish. Realize that meds don't make it go away, but they do damper

it. "I'm still befuddled by the urology office's non-responsiveness yesterday. "

Continue with severe pain.

6/24

Still thinking I have an infection that is causing the problems. Pain at a 7 again. Cut Percocet in

half.

6/25

Pain 5ish on urination, long recovery time.

Donna Apperson

(757) 561-9013

5004 Fenton Mill Rd

Williamsburg, VA 23188

Page 2

6/26

Pain explained by Dr. B's office as normal healing, as bladder spasm. I am hesitant to buy that.

Blog indicates beginnings of 'this should not have happened'.

6/27

Still taking pain meds. Slept 5 hours last night. Pain at a 1ish. Best day so far.

7/4

Still feeling the pain and tingles with urination. No heavy duty pain.

7/10

Blood in urine. Tingles (heavy) and after effects with urination. Almost like orgasm. Again told

this was normal healing.

7/14

Pain, blood, tingling increased, uber frequency, up 4 times at night. Urgency personified. "He

says it's normal healing. I say that's f** up, " Call in two weeks.

7/15

VESIcare. Tried to go back to exercise. Too much frequency and urgency in the pool. Read

VESIcare doesn't start working for 8 weeks. Almost a month out and still being relatively

dismissed by gatekeepers.

7/21

Going every 10-30 minutes (varies with 5-15 minutes). Staying home a lot now. Get up hourly at

night to this day (9/14) with an occasional 2-hour stretch of sleep.

7/22

Still having heavy "orgasmic" feeling with each pee.

7/24

Daily every 15, nightly around every half hour to an hour. Doc offered Myrbetric. I am good with

that.

7/25

Missed my 60th birthday party in VA Beach.

7/27

Beginning to wonder if something is really wrong that can't be fixed.

Donna Apperson

(757) 561-9013

5004 Fenton Mill Rd

Williamsburg, VA 23188

Page 3

7/30

Called doc. I was a tired mess. Getting up every 15 minutes to a half hour a night. They said

come in "to see him" at 3. Did emptying scan after UA. Nurse comes in with bag of VESIcare

and says to try this. What? We've done this before. Told me it was a nurse visit and I said that I

was there "to see him" at 3 like they told me. He brought up potential irritation or allergy to the

Mytomycin. I asked about cystoscopy and he said that wasn't my decision to make. Would not

offer pain meds, but offered Valium. I turned that down. Told me to take high dose ibuprofen

and Benadryl. I had one 45-minute stretch of no peeing. Still passing blood clots. Overnight, one

hour stretches of sleep.

8/3

Cystoscopy. Showed a serious amount of inflammation (like stalactites) and red tissues. Former

tumor spot nice and pink. Dr. B consulted with partners. One of the three had seen it once

before. 1 in a million allergy. Dr. B's attitude changed immediately. He said to let him know how

I'm doing. I said his staff appears to not get information to him. He gave me his email address.

8/5

Busch Gardens for 2 hours. Hit every bathroom that was a bathroom. No rides or shows; was

there to hang with sister and her grandkids. It was good to get out.

8/9

Rescheduled trip to Phoenix until November.

8/17

"I'm tired of being broken." Two months from original surgery. Still pain, frequency, urgency,

aftershocks.

8/19

Sent Dr. B email update. Seriously considering second opinion.

8/20

He replied saying to make appointment for Monday for another look. I'm over it. At about every

5 minutes, extending to 15ish with the ibuprofen.

8/22

VA Beach to sister's house. Two stops on the way, every 15 while there, two stops on the way

home.

8/24

In for cysto. Accepted Valium Rx for the days before next surgery, which is now a real thing as

the reaction inside is not much better. Dr. Schultz came in during cysto; Dr. Peet was a little

late, but all of them were slated to be there to see the sideshow that my bladder has become.

Dr. Schultz said that they were obligated to remove 'that.' Change of urologist after this

procedure is going to happen.

Donna Apperson

(757) 561-9013

5004 Fenton Mill Rd

Williamsburg, VA 23188

Page 4

8/26

Wet my pants. That is what my life has become. Humiliated.

8/27

2nd surgery. Paperwork says TURBT, but that's not the surgery I'm having. I am having a

cystoscopy with removal of inflamed tissue. I mention this twice. Surgery goes okay. Pain meds

and antibiotics provided, along with pyridium. Partial cystectomy not ruled out, but not today. I

know tissues were cauterized and underlying tissue apparently looks okay.

8/28

Expected peeing daggers and pain happening. Above a 10. Tampered by pain meds.

8/29

Slept for a 2-hour stretch last night. I feel like I might have hope. No more blood or strands in

urine and there hasn't been the extreme 'spasm' pain.

8/31

Urination still painful, tingle through to the top of my head, then after shock pain in the perineum.

Ranges from 3-7. My hope is dwindling.

9/1

Tried a Percocet. Haven't taken any in a while. It calms the surrounding tissue but does nothing

for urgency or frequency. Didn't expect it to.

9/8

More of the same, Pain on urination, frequency, little improvement. Saw Dr. Hoag. BP is way

up, which is not a surprise, given the past almost 3 months. Saw. Dr. Burgess and set

appointment for cysto on the 28th. Called Volz' office when I got home. I'm done with Dr.

Burgess' staff.

9/14

More of the same. If I take Percocet at night, the pain at night is tempered which helps not focus

on it so I can sleep, but I do not want to and am not taking it every night. I tried for three nights

and it was great. Having said that, I'm still up every hour. I’ll go to bed drug-free tonight. I need a

clean baseline.

Things from today

My big thing today was an appointment with my endocrinologist. My hemoglobin A1c is improved, but I did admit that most of my focus has been on the bladder issues. I'm going to start my spreadsheet again and will see her in 3 months.

While I was pulling into her parking lot, I got a call from Dr. Volz' office. My culture showed bacteria and yeast! I have an infection. I'm actually quite excited about it because it is tangible and can be treated with little hoopla. I've already started the diflucan and macrobid. This may or may not be playing a role in the severity of the symptoms I still am having. But you know what? He cared enough to do one more culture. It's crazy to be happy about this, but I am. It's a start.

Abbey's been her usual amazing self today. While I was gone, she took a bowl off the counter, but didn't dump it out. It looks like her real target was a piece of cardboard behind the bowl that had a little pizza mess on it. My fault for leaving it out.

I took a little trip to Trader Joe's and got out of there for <$30, Another amazing feat. I also did not go to Starbucks for a frappuccino and pumpkin bread.

So far, so good. I hope to continue to have good news to report. I don't expect anything overnight, but I have a good feeling about the direction in which this healing is finally headed.

Wednesday, September 16, 2015

Nothing exciting today

That just might be a good thing. Frequency and urgency are still with me. Other than that, I've been pretty much smiling today. My visit to Dr. Hoag's office was fairly unremarkable. I will continue on the BP medication as expected and will only be seeing him every 6 months.

Dr. Knudson is tomorrow. Thus begins the diabetes healing too. My A1c is lower, but not still all that great.

It was the usual up every hour type of night, frequency about 5-20 minutes all day, and I got a pretty decent nap today. I picked up groceries that are more diabetes driven and here we go on my continuing journey of healing.

Tuesday, September 15, 2015

Things I learned today

Mitomycin C is not used by all urologists routinely. Dr. V said for sure in severe cases when there is possible re-seeding of the tumor/tumors. Mine was detected so early that there was probably not appropriate risk to that treatment and little concern that it would have re-seeded.

Dr. V has seen an allergic reaction before and it was not pretty; it was an older person and was almost lethal due to her other conditions and age.

He said he would not have used it with me as I wasn't a candidate, in his opinion.

He agrees that pain medication does not help with the healing, but seemed to agree that they did help when there is severe pain like I was having 3 days after the first surgery.

He is concerned, as am I, that something is still going awry. The plan is to have a CT, with contrast this time, to explore in and around and outside the bladder, including the ureters. That should be done in the next few days.  He asked if I felt I could tolerate a cystoscopy and I agreed that I sure could as long as when we were done, I could get up and dash to the nearest bathroom.

He agreed to take me on and we shook hands on his being my new uro.

Before he ever entered the room, he had read everything that Sentara had on me, so he already knows more about the surgeries than I do. He explained that the second surgery was not a TURBT, but it was a TURB without the second T (tumor).

He said high dose ibuprofen won't hurt if it lengthens the time between pees, so I'll probably start that again and see if it helps. It was pretty dicey driving to Portsmouth, but we found a YMCA and I begged to use the facilities. They were super nice about it.

My handwriting is still poor. I filled out a lot of paperwork and would have had a hard time reading it myself. The first time that happened was when I was signing anesthesiology consents in my room before surgery the second time. I guess no rest and stress are having more of an effect than I thought.

I dropped Richard off where his truck was parked in Newport News and drove to Dr. Burgess' office to fill out a transfer of records and to cancel my scheduled cystoscopy in their office.

I have hope in my vocabulary again.

I'm not done with whatever is going on, but I have faith in Dr. V and his ability to not leave me out of the equation or drop the ball. For a while, he'll be in Portsmouth, but when he moves to Williamsburg again, the office will probably be close to home and it will be the same practice, so there won't be a whole new batch of paperwork to fill out!

Overall, I learned a few things, like my allergy was not 1 in a million and that not everyone uses the drug in question. I learned that Dr. V will listen and respond, and his plan includes a deeper look to find out why I'm still experiencing frequency, urgency, and pain.

I'm sure I missed some details, but there's the gist of my visit with Dr. V today.

Monday, September 14, 2015

Day before Dr. Volz day 1

My BP was fine this morning. I might have already mentioned that. I know it was the right thing to go on meds with the numbers that were happening with the pain incidents, healing, and body stress, not to mention lack of exercise and not sleeping.

I spent the first two thirds of the day in sort of a funk, partially feeling sorry for myself. I wish I was super human and didn't have those periods of down time, but I am and I do. I'm really sick of pain. I'm totally over peeing all the damned time. So, at one point, Abbey and I sat on the glider, enjoying the beautiful weather. I pet her. She licks me. I talk to her and she looks at me like I'm listening. She agrees that though I'm not in my 20s or 30s and don't care to do some of the social things I used to do, I'm not ready to roll over and give in. I got my knees replaced so I could get activity back. What do I miss right now? My exercise classes. I believe when I'm able to go back to that, I'll be mood up in no time at all. (The doctor says even if the BP goes back down with exercise, etc., he's going to keep me on a small dose for kidney protection as I have diabetes. I'm okay with that too.)

Abbey suggested that I just take the next few weeks for what they are, be the best me I can be, and after the next cystoscopy, maybe there will be real answers and real healing. She's pretty optimistic when I'm not. (Only a dog lover would understand who I know she was speaking to me. Grin.)

I wrote out a timeline for Dr. Volz. It's a very brief synopsis of the last several months' worth of blogging. I thought it was brief until I printed it and it was 4 pages. I had Richard read it and he felt it covered everything. He also agrees that there are more than one bottom lines - I've lost faith in the practice I'm a part of now and I need to get my life back. Not being a functional person is the hardest part of all. I can take pain pills; I can stay home and pee all day long; I can write about the good and the bad right here, but it's not the same.

So, let the good times roll. Mama's not pleased and I'm ready to do my part to make this situation better.

Funny thing - I was in Robin's pool for a while yesterday and did normal water exercises, and ended up wrenching my knee. I was like, "great, another issue!" I know I have to have the left one re-replaced, but I want to put that off as long as I can. That's a whole different kind of pain that is more explainable and improves every day, but I really don't want to do it until at least after the wedding! Today, it's better. Now that's the way stuff heals. It's not 100%, but it's better. Like I said, that's the way stuff heals.

I am happy that Dancing with the Stars is on tonight. A nice diversion. I finished the last of the trick or treat bags today and hope to get them listed on Etsy tomorrow. I have some pumpkin pie pot holders half made and will finish those and list them. Then it's back to the bags, but this time with brains fabric and blood spatter fabric :)  Maybe a blood spatter table runner. I love sewing for Halloween. See? It's not all awful; I do find things to do with myself that doesn't involve piss :)

There's a reason I don't drink

I went to Robin's yesterday for her pool blowout party. I never make it on Sundays as I work, so I made arrangements and headed on over. It was really too cold to swim, but we did it anyway. Shelly made something called pudding shots. Well, here's the thing - they were really good. I didn't intend to "drink" and really I didn't, but I had my fair share of pudding and called Richard to tell him I needed to hang out a couple hours before I was comfortable driving home. Today, all I can taste is the pudding. Whew. Water is my friend today. Alcohol is definitely not on my list of things I really like to do and I'll remain the handy-dandy designated driver and keeper of drinking friends. I have just as much fun and don't pay any kind of price for it. Whew again.

Up every hour last night, normal. Every 10-15 minutes today, normal.

I made a quickie time line of the blog to share with Dr. Volz tomorrow. I know it's a logistical nightmare, but I need to make a change and see some improvement.  Even the answers are not what I want to hear, I need to get something definitive happening here and my doctor cannot be so inaccessible.

No more bitching for today.

Sunday, September 13, 2015

Sleep?

I'm not 100% sure, but I might have slept in almost 2-hour spurts last night. This morning, I got up around 7 to go to the bathroom and the next thing I knew, it was a little after 10 a.m.

Did I really sleep 3 hours?

If I did, then I sure hope this is the beginning of longer stretches of sleep, maybe leading to a whole night? Could it be?

I still have pain in the nether regions this morning and am not quite sure why. I'll play it by ear and see how it goes. I have plans to go to Robin's pool party this afternoon. I will most likely take a suit and towel, but am not sure I want to deal with getting in and out. I think there will be enough social stuff happening that I won't miss the swimming. They're setting up cornhole too, so maybe I'll try my hand at that. The point is to get out and hang with the gals and that's what I'm going to do. Right now, the temps are in the 60° range, so let's hope it warms up some!

I want today to be low key. I have 3 doctor appointments this week and pretty much just want to get through them all without too much in the way of bad news.

My BP this morning was 130/80. Still staying in that range since the med introduction. Mucho gusto on that!

Long term, I want to stop talking about health shit. Not a bad goal.

Saturday, September 12, 2015

Later that day

Winnie and I were exchanging emails and I was trying to explain how the pain thing works and this is what I sent her:

"As soon as the last dribble dribs, start there with an "ow ow ow" kind of burn. Then think super minor orgasm without the good feeling and the shiver it sends to the top of your head before it stops. Then scratch sandpaper all over your pee hole area. Voila." I reminded her the level and intensity of the pain has improved from a 10 to a 3ish. 

I also added "LOL Since June 18. Now don't you feel super sorry for me? Woe is me.This could have been avoided if they listened to me on June 22. That's really the only thing that has my dander dandering."

Know what that wonderful sister of mine sent back to me? 

"Pfft... three months, 100 pees a day... that's only about 8,300 times. Sissy."

She's lucky I like her. 

When this first started the process was the same, but the pain level was unbelievable. Whew. Glad that at least that part is over. 


Side effect?

My BP was through the roof the last two times I saw Dr. Hoag. The first time, I was in extreme pain, stress, a mental mess from no sleeping. The second time was last week and it was attributed to stress, not sleeping, healing. I was put on a BP med, which I wholeheartedly agreed to.

Question - Would this med have been necessary should the allergy and eventually treatment been discovered and begun sooner?

Friday, September 11, 2015

Same ole

Nothing much to report except my BP continues to go down with the medication. Like I said, with the internal stress my body is going through, I was not shocked to see the BP number so high. Another side effect of the lovely healing process. Blech.

There have been no crises today. I did have to find the bathroom when I went to Food Lion tonight. Dammit! I had one trip there recently where I didn't have to go at all. This too will pass, right? Closing in on 10 days post surgery and I'm thinking normal healing. Tell my perineum that please, okay? It still catches fire a few times a day.

Last night was a one-hour at a time night. That's the best I seem to be able to do right now. As long as I get a nap during the day at some point, it works. Sort of.

So, my pee adventure continues. I dressed like a real person today instead of a schlub, and I think it sort of made me feel more like a person, at least on the outside. No need for the world to know what a pisser my life is at the moment. Get it? I made a little joke there. Pisser.

Enough for today.

Adversity

In the face of adversity..... wait, am I facing adversity?

Maybe.

Maybe not.

I'm facing some challenges, but they're all educational opportunities. Each step of this cancerous journey has been fraught with bits of learning that I didn't know I needed.

Other than on this blog, I generally don't express the negative aspects of what I'm living through. Oh yeah, there are some people I talk to, but even the level of pain I was experiencing - I didn't fess up to that until the second surgery was scheduled. Why include friends and family in the negative aspects of what my body was going through?

My bladder cancer journey is not over. I have some positive endings in mind and I have some temporarily terrorizing endings in mind, all of which are on a timeline with a lot of points in between that probably express reality.

I was reminded today that I used to go to the bathroom every 5 minutes during the day and every 1/2-hour at night, and to look how far I have come. It was the right thing to hear today.

There are myriad possibilities ahead. I'll experience them all with full awareness. What I don't think is that I will see it as adversity.

Late night brain drain.

Thursday, September 10, 2015

Quickie about 9/9

Day 2 of the Percocet trial to help with sleeping and going back to sleep after getting up every hour. I got up a little more often than every hour, but I had no problems going to back to sleep.

The day was filled with painful urination and afterward, and frequency of about 15 minutes to a half hour. We drove over to the ReStore on the other side of town and I went before we left, at the store, and as soon as we got home. We were gone about a half hour.

I'll try the Perc again tonight, but I think I'm switching off of it on Friday night. I may try nothing at all to see how I fare. I have to get back to nothing at all eventually. In my mind, the sooner the better.

I emailed Dr. Knudson (endocrinology) to double check whether she really wanted me to have all the blood work done again that I just had for Dr. Hoag. She agreed we'd hold off as she has access to the current labs. I sure didn't expect to hear back from her last night, but she is right on top of her email for sure.

BP yesterday was 134/81. This morning, it was 132/80. Much better than what Dr. Hoag got. I don't mind taking the medication; I need it. Body is stressing and zoom, up it goes.

Onward for today.

Tuesday, September 8, 2015

Miscellaneous questions

  • Why, when I called with the extreme pain episode, wasn't one of the partners willing to at least talk to me and instead, had the nurse tell me to go to a doc-in-the-box or my regular doctor as I might have an infection? I was 3 days post TURBT. Someone should have known I needed help. 
  • Why did no one contact me a day or so later to see how things went?
  • Why was I given VESIcare when effects don't begin for 8 weeks according to the web site?
  • Why was I then given Myrbetric when effects don't begin for 8 weeks according to the web site?
  • Why was I told to "come and see him at 3" and was given a nurse appointment and a suggestion to try VESIcare? (This is the appointment that I said I was there to see the doctor, Richard was with me, I hadn't slept longer than a half hour at a time for a couple days, I was in extreme pain, and Dr. Burgess seemed short with me/us.) As a maybe, he suggested maybe I was having an allergy to something and to take high dose ibuprofen and Benadryl, which I did. Valium was offered and denied as he would not prescribe pain medication, insisting it would not help with bladder pain. 
  • Why when I asked at the above appointment if a cystoscopy might be in order to see if something is going wrong did Dr. Burgess reply with, "That is not your decision to make." 
  • Why did it take so long to do a second look cystoscopy after the TURBT when I was in extreme pain the whole time, not to mention the urgency and frequency along with the lack of sleep?
  • Why did Dr. B. say "holy bladder Batman" when the pictures showed on the screen of the most awful looking stuff I've ever seen in what used to be a beautiful pink bladder? I wasn't until now that a true allergy was mentioned.
  • Why did all three urologists in the office come in to see the re-cysto a couple weeks later after ibuprofen and Benadryl treatment? Why did Dr. Schultz feel it necessary to mention the obligation to remove 'that'? 
  • Surgery was scheduled for 3 days later. Why did he not answer my email about the one patient Dr. S had seen with this reaction? I had asked how she fared. He did answer me just before surgery. I wanted the reassurance that she was okay. 
  • Why did it take me asking if I was going to have spasms again (which is what I was told the initial pain was) and when he said I probably would, why did I have to insist on an Rx for something for the pain?
  • Would treatment and outcome have changed, different, or improved had the practice taken my level of pain seriously when I very first called about it? Would the time between the first and second surgery have been lengthened or maybe not even needed? 
  • Will I need the partial cystectomy? That one, only time will tell, but he could not tell me no when asked today. 
My answers are my own opinions - I feel like I was dismissed as a whiner, a lightweight with pain, and someone who wouldn't accept that this was normal healing. I believe that there are serious disconnects between the front office, nurses, assistants, and physicians, and that it's highly probable my messages were not coming through loud and clear and not getting to the right people. I feel like the whole practice dropped the ball with postop care. I feel like I missed quite a few events and opportunities this summer and I've expressed those earlier in the blog and there is no need to go further. 

I believe that I've had enough. I took a trip to Richmond Saturday with two stops up and two stops back. There was also the draining of my tank before we left and as soon as we got home. I will have to, for now, accept that as my fate and just get back to living. 


Follow ups

10 a.m., appointment with Dr. Hoag. I told him that other than the level of pain from when he saw me last (my crisis day), nothing had changed and that I had another surgery. He seemed somewhat befuddled and gobsmacked too. My weight was the same, which was a surprise to me. I was sure I had gained over this interval as eating has been meh and exercise has been nonexistent. Blood pressure, though, was through the roof due to all the stress and other life changes that have been going on since April and June. He prescribed an ACE inhibitor and that also acts as a kidney protectant, so I'm fine with that. My diabetes will be thwarted for that organ at least.

We addressed the what's next for the bladder issues. I told him I was considering switching to Dr. Volz once I knew what was up. He suggested to stop putting it off and go on and make an appointment in Portsmouth. That's what I did when I got home, but we'll get to that. We discussed how the Riverside Urology office is too busy and what I heard, but not exactly what he said was, they couldn't possibly provide the level of care I needed. I want to reiterate - that is paraphrased.

I will see Dr. Hoag in a week for a BP check.

I left and went to Chickahominy House and it was the perfect interlude. I had some time to kill, so went over to the Habitat for Humanity ReStore. Wow! They have an amazing array of stuff for not a whole lot of money. I was impressed and found myself a couch too :)

Off to Dr. Burgess' office. I saw him as I was checking in and he asked if I was smiling yet and I said not quite, but that I'd like to say I was! He said he had good news for me. I was called back and did my urine test and then hung out in the patient room. It only took a few minutes before he came in:

  • The tissue removed was not cancerous.
  • The tissue beneath it was pink and healthy looking.
  • There is still some healing to do, but now I am experiencing the symptoms I should have had the first time around.
  • He was surprised that Dr. Schultz said, "He's obligated to remove that!" when viewing the cystoscopy live before the surgery.
  • He said there was some improvement from the second cystoscopy to the time of surgery.
  • He admitted that a partial cystectomy is not something that he would do now. He did not rule out that it may need to be done later. 
  • I explained that I'm still going every 5-30 minutes during the day, that the pain level is lower, that I'm up at about a 1-hour interval at night. 
  • We talked about bladder training; I initiated this. We agreed it probably wouldn't work much right now. 
  • We talked about my trials for sleep - 
    • Valium didn't help me sleep and though it wasn't a barrier to going back to sleep after getting up, my mind was still racing.
    • Ambien makes me too tired and I'm afraid I'm not waking up on time.
    • Nothing at all gets me to sleep eventually, but it a barrier to going back to sleep with the hourly wakeups and I find myself reading or getting up out of frustration.
    • Percocet calms the burning pain that I experience in the nether regions, calms my brain enough to get me to sleep, and is not a barrier to getting back to sleep. 
  • We settled on a Percocet trial. 
  • I told him I wanted to mention from patient to doctor that when someone says they can tolerate pain (pointing at my knee scars) to please believe them. 
We talked about the rarity of Mitomycin C causing such an allergy, that it's just something that is done all the time, and Dr. Schultz, in his 28 years of practice, had only seen it once. I reminded him that my asking how Dr. S's patient fared before my own second surgery and his response that she did well was good for me to hear at the time.

I told him I had not bombarded him with emails this time because I wanted to try to heal myself with water, rest, and all that good stuff. 

I asked him to believe his patients and that now we know it was not normal healing. He side hugged me close and sent me on my way with an order for a cystoscopy to check for further healing in 4 weeks.

I called Dr. Volz' office when I got home. I told them I'd like to have a conversation with him before I got into a second opinion or switching provider situation. I guess I'm not the first one to do that because they got me an appointment for next Tuesday at 1. I want my life back and I want faith in my provider. 

I'm sure this is not the end of the story, but it may be the end of a very dreadful chapter. Like Dr. Hoag said, a lot of people say they had a summer of crap; you're the first person I've heard say they've had a summer of pee. 


Monday, September 7, 2015

Angst day

Tomorrow is Dr. Hoag (regular doc) and Dr. Burgess (pee pee doc) day. I get results from pathology, which is always worrisome. I get to complain about pain that is still occurring, and I get to hear the 'what's next' from Dr. B.

Dr. Hoag and I will not be seeing each other as much as we used to now that I have an endocrinologist, but I did read my blood work and saw that my Hemoglobin A1c was down by 3 points, which is frickin amazing. That means, on the diabetes front, I'm doing better. I totally need to get exercise back in my life and I will.

My personal long term goal, given that there are no more complications, is to get to where I have 1-hour stretches between visits to the terlet and then go back to the pool 3 days a week. I need it. I want it. I miss it. The rest of my life is better when I attend class.

As for today's report, I slept about an hour at a stretch last night. No pain meds. No sleeping pills. I was at about 15 minutes to a half hour today. I drank 3 bottles of water to dilute, but still experienced pain today. It's a weird thing that starts to hurt toward the end of the stream and it creeps up to the top of my head. This morning was particularly bad (TMI time), so I did a cold cloth routine to the perineum, made sure it was good and dry, and applied A&D. It helped some. I still feel there's something caustic happening.

I want to be optimistic. I truly do.