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.)