Monday, August 31, 2015

Let there be pee

I learned something today. If I don't drink water all day long, the urine gets very concentrated and a touch caustic, and I even have false alarm pees. If I drink water, I have a real stream (shortened though it may be) and the pain level is 1-4, not 5-8. Water is my friend.

Every pee until Friday hurt like a mofo, at least 7-10 every time and between pees, the level was a 3-7. I'm very happy to have 3 be the average now. The day after surgery, Friday, it was still daggers, but I took medication that day for that reason. Saturday was less daggery and more ouchy.

The good news is it's getting better. It's all about the pee right now. I hope the frequency slows in a week. I need to be able to go out and live my life. Dr. Burgess told Richard 7-10 days for things to start getting back to normal (after surgery).

No exercise yet as I'm still semi exhausted. I need to start sleeping longer, but the 1.5 hours at a time last night was a wonderful improvement.

Onward toward Tuesday.

Still up a lot

About every 1.5 hours tonight. Not bad. I did find earlier theat if I had a soda, there was pain down below.   Switched back to water and it was much better.  No bubbles for me for a while.

Back to bed with me. 

Sunday, August 30, 2015

Little update

Last night was a poor sleeping night, but not that bad. I got up about every hour and when I got up at 2 a.m., I wasn't able to go back to sleep, so I got up, finished my book, and then slept like a baby an hour at a time.

There is still minor (3-4) pain with urination. The stream, though, is more like normal. It used to trickle and the  pain was >10 with residual pain of 3-6 for 15 minutes or more. The residual pain now is much less extreme and for a much shorter period of time. More than most people need to know, but the improvement is extraordinary. Daytime frequency is still an issue, but it's at about 15 minutes now. Interestingly, there has been air expelled a couple of times today from the urethra. My mood is vastly improved. I'm still tired, but it's not compounded by pain and frustration.

Richard told me today that Dr. Burgess gave him a time frame of 7-10 days for healing. This is day 3.

The weather is beautiful, the dog is healing like a champ, and Perry Mason is on television while I work. What more could a gal ask for?

P.S. What I'm not seeing are clots of blood and strands of what I thought were mucous. That, to me, is an indication of how wrong things were before and how right they are becoming now.

Saturday, August 29, 2015

Saturday thoughts

Last night, I got two 2-hour stretches of sleep. The others were an hour, but I like the improvement. I am off the pain meds; the "pissing fire" is now "pissing hot water" and bearable. I need to have my brain more engaged during the day and don't like not being able to drive.

After the TURBT in June, it was day 3 that my extreme pain episode began. Looking back, I now know why pyridium did not help - it was not regular bladder spasms; it was my bladder telling me I was having an extreme allergic reaction. I think what bothers me most is that the doctor's office didn't take me seriously and called everything "normal healing." I had done my homework at the time and though there was information saying that spasms, relatively normal after this type of surgery, were painful, there was nothing that took it to the extreme I was experiencing. It wasn't until much later that I heard the words, "maybe you're having an allergic reaction to the mitomycin." It was the office visit where the nurse told me I was there to see just her and I said that, "no, I am here to see the doctor," and reiterated that the phone call I had received told me to come in and "see him." It was a very low point for me, so much so that I had to have Richard there to hear what was being said as I was sleeping in 15-minute spurts and was unable to maintain that which I processed. That's also the reason I have written everything down.

This morning, I'm feeling okay. Like I said yesterday, I'm not there yet, but I have hope.

I am absolutely doing things by the book. My diet is back closer to primal and as the not-so-primal foods leave the house, they won't be returning. I'm keeping a better check on blood sugars. Today, I will take a short walk. I'll avoid the pool until I am fully healed. Overall, I have the desire and energy to take care and move forward.

Maybe tonight I'll sleep 3 hours!

Friday, August 28, 2015

As the day has continued

I have felt mentally more like me. I've done some busywork around the house that has needed attention for a while, including a load of clothes and cooking dinner. I haven't felt up to doing just the normal day-to-day activities like that for some time now.

Richard told me that Dr. Burgess told him the cauterized tissues looked pretty good. I like that concept. I've seen very little blood in the urine today, but it does still feel like fire on the way out. My hope is that I won't need the pain medication for more than three days. I have used the A&D ointment today, twice, in order to protect the perineum and surrounding tissues.

I had two naps today to help overcome the up every hour sleep of last night. The first one was early in the day and was about an hour and a half with one pee break. At around 2 p.m., I hit the wall and needed sleep. I gave up my 4 p.m. shift and decided to just sleep until Richard came  home. He came home and saw me sleeping in the recliner and left me there. At 6 p.m., I got up on my own. It was actually a total of about 3 hour of uninterrupted sleep. I haven't done that since June 18, 2015! There were no pee breaks. Amazing.

Dinner was simple, but I felt like cooking it, another bonus. I got the dishes done by hand rather than leaving them until tomorrow to put in the machine. More like me.

I don't want to give the impression that all is well. All is not well. But you know what? All is better. And I still have hope.

On average, pee intervals have been 5-20 minutes. I've been drinking water and that should help with everything.

And as a bonus, Abbey is still doing well. Her hair is growing back beautifully and it almost looks like her eye was never marred. I'm so proud of her. I cannot go near PetCo tomorrow as the Virginia German Shepherd Rescue will be there with adoptable dogs. No!!!!

A better day?

It's TMI time.

When I got home after surgery yesterday, every pee felt like daggers. Before surgery, it was a searing, burning pain. Both at a >10 level. I took my Percocet last night and dealt with it. I did get up every hour overnight, but I was totally able to get right back to sleep. But, and this is a huge but, every pee was a tad less painful than the one before and this morning, I'd say it's a level 5ish. That's expected improvement and what should have happened with the initial TURBT in June.

Richard tells me the doctor said the underlying tissue looked good and he got all the inflammation. I did ask before surgery if there was a chance I was going to have to have a partial cystectomy (partial removal of the bladder) and he said it might be an option, but not today (yesterday). From what I understand, that's off the table, but I'll know more after my follow up appointment in two weeks.

I have hope for the first time in months. I'm not 100% cured and have some healing to do over time, but I do not feel like I'm dying anymore.

Allison accompanied me to the hospital. I was called back to the pre-op room at 2:10ish. She stayed through all the fun pre-op questions and IV placement. What a champ. Before we left to go to the hospital, I was a tearful person. I think I was more scared than I was willing to admit. She was great about having conversation and keeping me preoccupied. Richard arrived about 2:50, and Allison left shortly thereafter to dog sit and do more homework. I think it was good for both of us to have that time together. My urination frequency was extended while in pre-op, mostly because I had no food/drink all day.

The anesthesiologist came in and was very attentive. We talked about diabetes quite a bit. He seemed very interested in the topic. I admitted that the last two months, I've been a "bad" diabetic, but I've been one big stress ball. (The two days I took Valium, that was much improved, by the way.) He explained what he was going to do and left. I saw him again in the OR, where he was again amazingly attentive. I got oxygen via mask and that was all I remembered. I think there might have been a little something in that oxygen.

The operating room nurse stopped by and explained she'd be transporting me. Then Dr. Burgess came by and we had a talk. I asked him about Dr. Schultz' patient and how she fared. He said she recovered fully. We talked potential pain and he suggested that the pyridum should help more this time if I have spasms because I'm not having an allergic reaction this time. You know what? I think the recovery room nurse is the one who told me that last part. Once he arrived, things started happening quickly and off I went.

The folks in the OR were chatty and we talked about the old hospital, where we had worked together apart in the late 80s. We had never met because she was in the OR and I only worked in the OR one time due to their secretary having had an emergency. As an aside, the nurse that was supposed to take care of me after surgery was Javeen Hudson; she and I had definitely worked together. We had chatted a bit, but they decided to discharge me from the recovery room, so I didn't see her later after all. It was nice to see her. As mentioned, the oxygen is the last thing I remember in the OR.

I was in the recovery room around 5. I'm not 100% sure of the time because who knows how long you're waking up when you've been out. Dr. Burgess was there doing dictation and gave me a thumb's up. I don't remember if we chatted. I think we did, but I can't be sure. I had a lot of pain in the perineal area, but that was expected. I did the bedpan once and then after I was more aware, I was able to be walked to the bathroom. Ow! I do not remember my nurse, but the other two nurses in the recovery area remembered me from June. My blood pressure and oxygen and everything snapped right back, and a very short while later, Richard came in. I was walked to the bathroom again and got dressed, and there was a wheelchair waiting for me when I came out. I'm pretty sure we were home by 6ish, which was shocking to me.

Allison was still there and stayed for a while. I drugged up. They had given me a Percocet in the recovery room, but as I was peeing daggers, I wanted relief, so took two more before the night was over. I notified people who needed to know things went well and went to bed at a decent hour. I was going to sleep downstairs, but went on up to my bed with the clean sheets. Other than getting up hourly, I slept really well. There was enough stuff roaming around in my system that going back to sleep was not even close to a problem.

The evening was quiet. Allison left to have dinner with Tom. The dog was glued to my side. Richard was happy that I was happy and feeling more hopeful.

I am cautiously optimistic, but I might be fixed. Amazing.

(More later as my head continues to clear and the day wears on.)

Thursday, August 27, 2015

Surgery day

Okay, I'm pretty damned nervous and I won't deny it.

I looked at the options for partial cystectomy, the worst case scenario. It's not the end of the world if that's what happens.

Right now, Allison is here working on her homework and I'm going to pass some time playing Pogo.

It really bothers me that it didn't have to go this far, and yet it did. If they had listened to me when I first started saying things were not right, maybe it could have been addressed earlier.

On that note, I'll be sliced and diced at around 4. I wish me luck.

Wednesday, August 26, 2015

This is what my life has become....

...and hopefully will be repaired tomorrow.

I went to have blood drawn this morning for the presurgical stuff. The anesthesiologist requires a fresh hemoglobin draw, so no big deal. Afterward, I had some time to kill before Michael's opened. This was a planned trip as I wanted to get whatever Halloween ribbons I could get from them. I opted to take the Parkway to Jamestown, then go down Monticello to Michael's. That's about 15-17 miles to the store going a roundabout way.  I had peed at the hospital, so that was covered.

About halfway to Jamestown, I felt the urge to go. I felt like I could wait. I started thinking about the closest public bathroom and remembered the park near Tom's apartment on Monticello. Kidsburg. Just before I turned right on Monticello from the Greensprings area, I had some leak. No big deal. I was wearing a pad. By the time I got to the park and started getting out of the car, I wet my pants. I wet my fucking pants. In the parking lot, getting out of the car, at the very building where the bathroom was. I wet my fucking pants. I had zero control. None.

There was no one around, so I headed into the bathroom and checked and yep, wet underwear and shorts. Crap. I blotted the underwear with toilet paper, but that really didn't do anything. I noticed they had hand dryers instead of paper towels. I put on the damp undies and then dried my shorts under the hand dryer. Then I went back into a stall, put on the shorts, took off the undies, and dried them under the hand dryer. I was fortunate that no one came in until I was back in the stall putting things back on. With no pad. Argh. Now what?

I drove to the Walmart grocery store nearby and bought a pack of pads, paid for them at the pharmacy, which was near the bathroom, and took them in there and put one on. I also went to the bathroom again!

I wet my fucking pants. How humiliating.

Now I am home after errands. I went to Michael's, went to the bathroom there too, and have been twice since I got home. I am not allowed to take ibuprofen, so this is me without any medication relief.

That is about it. I'm embarrassed to write it, but feel obligated to do so. I need to be able to look back and see where I came from with this stupid adventure. I have mentioned, I signed up for a tumor and removal. I did not sign up for an allergic reaction that has ruined my summer, kept me from sleeping, and thrown me into a  mental and physical tizzy. No more complaining.

It's time to take my life back.

Tuesday, August 25, 2015

Random pre-surgery thoughts

The preadmission people never called, so I called them. That's taken care of. I do need to have blood drawn in the morning, but that's no big deal. Then the billing people called and collected their $125 co-pay. Paperwork done over the phone and on line. I should get a call tomorrow telling me what time to arrive, but I do know the surgery is scheduled for 4 p.m. on Thursday.

I need to not smoke tomorrow or Thursday. Maybe I'll just quit. Who knows.

The fun part is that I can't take ibuprofen anymore. They normally recommend not taking it for 2 weeks before surgery, but it's the only thing that keeps me from peeing every 5 minutes. It will be fun to see how this goes.

The pain on urination is worsening. I expect that to get even worse with no ibuprofen.

I would say overall, this "recovery" period has been at least twice as bad as recovering from the two knee replacement surgeries. I really wish the doctor had taken me seriously sooner than he did. I wrote requesting him to write the Percocet prescription and also wrote asking what kind of treatment Dr. Schultz' patient had and how she fared. Dr. Burgess has not answered either of those.

My advance directive has been filled out. I need to sign it in front of  witnesses and that's that. I did check with Ronnie first to make sure he was okay being listed second after Richard.

It's time to feel better.

Monday, August 24, 2015

Facing surgery again - relief is in sight

I got to Dr. Burgess's office at 9:45ish and was treated like very well, not like a problem patient or a whiner, rather like a VIP. I asked the office staff to please let the nursing folks know that if they needed a urine sample that sooner rather than later would be great. They did that almost immediately. I had not taken ibuprofen this morning because I wanted a true visual when he did the cysto. The nurse met me outside the bathroom and walked me across the hall to the other suites where they do their cystocopies. The nurse gave me a dose of Cipro, which is standard for the procedure. Got my lower region nekkid and sat on the table and waited.  He came in and I told him I had a couple things to talk to him about. First, I wanted my United Airlines insurance paperwork. He had just filled it out and listed cancer and chemotherapy and that he recommended I not fly. That's perfect. The other thing was he had suggested Valium. I told him I was taking Ronnie' stuff and he wrote the Rx right then and there with 2 refills. 

Then it was showtime. He fired up the cystoscopy machine and off we went. The stuff looked like stone last time I saw it. Today, it looked like icky stretched out wet cotton strands. Just as much of it. And every time he touched any of it, it bled. While they do this, they introduce water so they can see what's what and that makes me need to go like right now. So, I'm laying there doing the pee pee dance while he's touring the bladder and the other two doctors arrive and the senior starts talking as if I'm paying attention. I'm trying not to pee the table, which I can't anyway because there's a thing blocking any exit. Argh. The senior (Roger Schultz, MD) said something about 1 in a million and that he had only seen this once in his career. Trying to remember details here. Then he mentioned that it had to come out per the quote above. He said they were "obligated to get that out of there." 

Dr. Burgess took the thing out and the two extra doctors left (one [happens to be black; didn't catch his name] didn't really come all the way in and stay because the live show was over), and I made a mad, nekkid ass dash to the bathroom. There was some blood, but I expected that. I got myself dressed and headed for the room the doctor was in.

He wanted to do this surgery as soon as possible. He asked if I minded saying "by patient request, Sentara" which means it will be done near here instead of Newport News. It will be a TURBT again, same surgery, no tumor. He said it does not look like anything that is malignant based on their discussions. He found 4 p.m. on Thursday and asked if I could do that. Remember, I'm sort of in charge this time. I agreed and then laid out a caveat - I asked if I was going to have bladder spasms again. He said probably. I then said I wasn't leaving the hospital without a prescription for pain meds (I later emailed him with the exact pain med that Dr. Hoag had given me). I gently reminded him that I was not a whiner and that now that we know what's going on, I'm ready for it to be over. 

Now I need to decide on whether or not to pursue legal remedy for the period of time that I was considered a whiner and going through "normal healing," which I was not. That is yet to be determined. 

I had a nice talk with Richard after I got home and he's down with the plan too. I will still change urologists when his doctor is in Williamsburg. I shouldn't have to email my doctor directly to get messages to him. It's nice to have that option, but it's wrong. 

Here, later in the day, I am amazed at how the Valium took my stress level down to a reasonable level. I'm also amazed at how just the notion of this maybe being over after Thursday elevated my mood. I haven't been honest with anyone about the amount of pain I've been having. I think soon it will be a thing of the past. 

Allison just offered to dog sit Thursday afternoon and I took her up on it. I'm about to cry with happy. Naw, I'll save that for Friday.

Anyone who is reading this, please cross your fingers and hope this is the answer. 

Saturday, August 22, 2015

Embarassing

I went to Adam and Sandy's in Chesapeake today. It usually takes an hour plus to get there, but the traffic was heavy as it's near Virginia Beach. I had to stop twice to go to the bathroom, even though I had taken ibuprofen to hope for the inflammation to recede. The second time, I didn't make it. Thank goodness I was wearing a pad and had an extra. It could have been a hot mess.

I didn't sign up for this. I signed up for a tumor and removal of same. This allergic stuff has affected my whole summer. I went to Busch Gardens to walk around with my sister and her family, and hit every bathroom we came to. What kind of fun is that?

I'm not being woe is me, but am pointing out to myself that my whole summer has revolved around "where is the next bathroom?" I didn't go to the cookout on my birthday. I haven't been to visit my son in Glen Bernie. I can't go to my exercise class. I have to time even short trips to the grocery store, and that includes one or two trips to the bathroom. I haven't slept through the night since June 20th. I sleep about an hour, get up, pee; sleep another hour, get up, pee; etc. And that's with Ambien.

Without ibprofen, it's every 5 minutes to 15 minutes.

Quality of life? What quality of life?

Coming home today, I took a different route with less traffic, and stopped once. I barely made it. From there, I went to a craft store in the same shopping center and then drove home. Soon as I hit the house, boom, gotta go.

I've been trying to do bladder training, but it's not working. I literally cannot wait when my body says go. With training, you go ever hour or every half hour whether you need to or not. The theory is your body will adapt to that schedule. Bullshit. It ain't happening here.

I'm 60. I'm not 80. I should have more going for me than I do at this point. I should be going for long walks with my dog. I should be going to the Rec Center for my classes. I should be driving across town to get beef loins and good vegetables. I should have been able to fly to Phoenix 4 days ago.

End of pee rant. I am so over this.

Friday, August 21, 2015

Such nice news followed by a hopeful day

I'm so happy for Allison and Judge. She wants to get married at Disney World with immediate family only, so that means mom and dad are going to Disney World.

I have two questions for myself:

  1. Will this bladder/frequency thing be over with by then? Hope!!!
  2. Can I lose 100 pounds by January? Okay, that's not going to happen, but I can eat right and maybe lose 15 in three months.
On the bladder end, I was going every 5ish minutes at Robin's house, but took some ibuprofen while there and extended it out to about half hour to an hour. Much better for card playing. Same thing this morning, and I was up every hour last night. Tired today, but that's expected after non-restorative sleep and not getting to bed till 1 with all the excitement. 

I'm on hold with Dr. Burgess' office as we speak. They called me for some reason. Ooops, she's in a room with a patient and they'll leave her a message. 

Other good news for today - my sewing machine is ready to be picked up at the Bernina. I have a vest to put together today and want to try the what-I-remember-as-the-best-buttonhole-maker machine (an older Montgomery Ward machine I bought a while back and had refurbished) before I break it down and put it back on the shelf. That's the plan for this morning.

My baby girl is getting married.

Thursday, August 20, 2015

Good news!

I'm going to be a mother-in-law. It's all about me, right? NO, it's about Allison and Jonathan.

Congrats to my daughter and her fiance.

Cysto scheduled

I heard back:

Burgess, Scott M.D.

8:17 AM (5 hours ago)
to me
Thanks for the update, lets look in on Monday if you can make it.  I think I have a procedure slot of two late in the morning.   If you can to call the office today and ask to talk to Debbie, she can get it set up.
Scott
Scott V. Burgess, M.D.
Riverside Urology Specialists
Williamsburg and Newport News
 

I made the call this morning and the person who answered the phone was a bit nonplussed, saying she saw nowhere to put me in. I told her that Dr. Burgess had asked me to call in and arrange it with Debbie. She relented and said she would talk to Debbie. I hadn't heard back by about 1:30, so called and spoke to a much more accommodating office person. She told me it looked like they had me down for 10:40 a.m. on Monday, and that she'd talk to Debbie. I have the appointment on my calendar and will definitely be there.

Now the questions begin - do I need surgery again? Do I need steroids? If surgery is recommended, a second opinion with Dr. Volz is a given. Any other advice or plan will have to be considered for a second opinion as well. Dr. Volz is in Portsmouth right now and moving back to Williamsburg in a couple months. That means a lot of paperwork for me with new patient stuff in both places, but I trust him. He took care of Richard and has followed him since his hospitalization with Lyme disease. 

I'm still beside myself with this urgency, frequency, and pain situation. I've had it. 

Wednesday, August 19, 2015

No real change

I went to the grocery store yesterday and had to find the bathroom twice. This is getting very frustrating. I need to be able to leave the house. I need to be able to live.

I continue with 800 ibuprofen t.i.d. and Benadryl. I'm still pissing fire and though the orgasmic feeling is gone, something's still up down there.

I'm exhausted beyond belief. I sleep an hour or less at a time and when I try to nap during the day, I might get an hour or a half hour at a time.

To the end of wishing to have this done and over with, I sent Dr. Burgess an email today:



Donna Gettings Apperson dgapperson@gmail.com

3:45 PM (0 minutes ago)
to Scott
My next appointment with you is September 14, for followup and cysto.

I wanted to let you know I have seen very little change with the high dose ibuprofen and the Benadryl. I am going to the bathroom every 5-15 minutes between dosing. After dosing, I can go a half hour to an hour at best. I still am up at least once an hour at night, even with the assistance of Ambien. When I do go, every urine flow causes a burning pain on the way out and it lingers afterward. I am using an ointment to protect the skin, but since the skin is not the problem, it's not really helping.

Just wanted to let you now that whatever is going in there, I'm still unable to lead a very functional life away from home. 

I dropped off the insurance forms for United Airlines. Please let me know when they're done and I'll come by to get them.

Do you want to wait until September 14 to take a second look? 

Thanks.


I've had enough. I'm thinking it's time for a second opinion, but want to get the exam and plan from Dr. Burgess first. 

On another note, Abbey is doing well with her lampshade collar. She's letting me put the eye drops in and taking her antibiotics like a champ. Her left eye is starting to heal nicely. Considering she almost gouged it out on Saturday, she's doing great. 

Monday, August 17, 2015

Friday, August 14, 2015

Shitty day with exceptions

Allison rented a car and drove herself and her stuff back from Chicago today. Summer internship over!

I'm still pissing fire and that's making me grumpy. I got out a few times this week - getting the oil changed in Richmond, Hancock's in Richmond, other side of town to deliver insurance forms to Dr. Burgess, a couple of trips to Joann Fabrics, I went to Robin's last night and socialized with the gals.

I'm still getting up every hour at night and when ibuprofen is not on board, I am up every 5-15 minutes during the day. About an hour after I take the ibuprofen, I can go a half-hour to an hour, depending on what I'm doing; otherwise, I have to almost run to get to the bathroom in time. I'd like to say I'm seeing some improvement, but I'm not sure I am.

The changes I see are in me getting out more. I'm overeating, though. Argh.

I think I'm having a bad few days. I fight the 'bad' all along, though. I still laugh and have fun, but it's time to step it up a little bit more.

I'm worried about my dog. Her skin lesions are not getting better. She has scratched above and below her eyes, and they are running with a whitish goop. She lets me do warm and cool cloths on her eyes; I think they're bothering her more than he lesions. She does have a vet appointment on Tuesday and I restarted her Zyrtec in case there's an allergy component.

End of grumpiness for today.

Sunday, August 9, 2015

Changes

After hearing back via email from Dr. Burgess today, I decided to reschedule my trip to Phoenix. I'm good for an hour or so after I take the ibuprofen (and that lasts for maybe 3 hours), but other than that, it's every 15 minutes max. Plus, I have some discomfort/pain still, not so much the orgasmic thing, but close. Why be miserable when on vacation? It's 150° out there right now and it just doesn't seem like the right thing to do.

I rescheduled my flight till November. The weather will be gorgeous. My bladder mess should be behind me. We will get to actually do things. Winnie's leaving Phoenix probably in the spring, so this may be my last chance to go out there and our last chance to just go roaming and see what's what in the Phoenix area.

I feel like a weight has been lifted. No more worrying about whether or not I can fly. I feel good about this.

Now to continue the healing of the inflammation/infection.

Friday, August 7, 2015

Taking my life back

No, I don't sleep much. Yes, I pee all the damned time. Yes, I'm still sloughing off crap from my bladder. But, no, I'm not dead. I may not feel like me, but I'm thinking it's time to start trying to make that happen.

A couple things happened this week which fall into the positive column - Going to Busch Gardens with Stefanie, Adam, Sandy, and their kids for a couple hours. Watching the kids and hanging with the family was good medicine. I also went to play card with Robin last night and just had good conversation and silly talk. Plus, I won. Not by much! It was neck and neck all the way, which made it a great game of Rummy. Both things were part of my "I can't sit at home one moment longer" moments.

Every day is a new day. Every day is a gift. I got to wake up today.

My plan is to start with food today. Kinda paleo, definitely low carb, focused on flavor and controlling diabetes. I want to keep myself pretty strict and honest for a few days until I fall into a rhythm. I'll be using My Fitness Pal to keep up with macros and calories. Here's my breakfast of eggs, zephyr squash, bacon, and a smidgen of shredded cheese (no ketchup - steering clear of super high acid foods for now):


Of course, I shared the bacon with Abbey. Still using the no sugar, no chemicals bacon from Wellness Meats. It's like the best bacon around!

The day has begun. I'm sick of being sick. I'm ready to be well.

Tuesday, August 4, 2015

When a half hour feels like the best

Most of today, I've had half-hour or more intervals before going to the bathroom. Not bad.

I did an hour in the pool and had a crappy nap, so I should sleep as long as my bladder will let me tonight.

Tomorrow, Stefanie, Adam, Sandy, and their two kids are going to Busch Gardens. I am thinking I just might be able to join them. They'll be there around 10ish. If I go, I may go early so I can get my pass and handicap bracelet. If I'm able to hold myself to the half hour schedule while awake tonight, it's a done deal.

I'm rather excited about the option of going out tomorrow!

News Schmooze

Nothing exciting today. I did get out to exercise in the pool for an hour. Any piece of normalcy really rules.

Still going to the bathroom with 15 minute max frequency when not immediately after taking the ibuprofen. With it, I can go an hour.

The trip to Busch Gardens is off tomorrow. Maybe I can go later this year. Another family outing, pfft.

I called the insurance people with United. It sounds like it won't be huge trouble to cancel or reschedule my trip to Phoenix. I am sincerely doubting that I'll be flying on the 18th.

Like I told a friend, this summer is and has been a wash, and I'll deal with it as needed. A positive attitude and sense of humor are what I need most of all.

Thinking no more surgery thoughts.

Monday, August 3, 2015

Spelunking is gross

I went in for the cystoscopy and was able to watch the whole thing, seeing what the doctor saw. I believe what he said was Holy Bladder Batman!

From here, I will paste an email that I wrote to my sister since I don't feel like doing it all again:

I have sloughing stuff and new stuff that indicate a pretty nasty allergy to the chemo they put in after surgery (and also drained). What were once pretty pink bladder walls are now one half normal and one half gross. 

He consulted with the other two partners as he had never seen this before. One on the partners had seen it once. I'm the lucky 1 in 100,000 to be allergic to the stuff. 

Surgery would probably make it worse, but it may be an option. We talked about my trip, and he wants to talk to me in a week to make that determination. With the insurance and verification from the practice, I would get flight fee back 

For now, high dose ibuprofen and Benadryl. No acidic stuff. Lots of water. 

I saw the scope as he was doing it and am relieved that I haven't just been being a big baby. On a bright note, the surgical site is beautiful. It's the top of the bladder that looks like someone has been excavating - half gray/white and half bright red. 

That's the news.

12:30 p.m.
Just sent this email:

Donna Gettings Apperson dgapperson@gmail.com

12:28 PM (0 minutes ago)
to scott.burgess
Hi Dr. Burgess,

I wanted to bring to your attention something that happened in the recovery room on June 18 after my TURBT. I was pretty much fully awake and having a chat with the nurse, a youngish gal with long hair, and she reached down and panicked a bit because she had put her hand "in a used kit." I'm not sure what that meant, but took it to mean the kit she was using had been compromised somehow (it was to the left, near my leg, on the floor), and she was splashed with mitomycin C. She then left to go to employee health to be evaluated.

Was there possibly something awry with the whole process in the recovery room relating to the medication? 

I look forward to talking to you Monday and hope that there will be nothing but good news.

Time to go spelunking

The ibuprofen is helping some. I'm up to sleeping an hour at a whack, which is certainly better.

I have a cystoscopy planned for 9 a.m. to see if there's something else going on. I need to apologize to Dr. Burgess for being such a cranky space cadet and talk about the medication options. My latest and probably negative culture should be back too.

Maybe today will hold an answer and maybe it will provide more questions. We'll see.

Shower time.