As I mention in my last post, I have clothes to wear!! I'm still in such incredible bliss about that. It was so isolating to have nothing that I could wear in public - only pj's - it was such a weird feeling! But I thankfully donned a fantastic dress that hid all my bloating and drains and bags - it felt like I had an angel's outfit on! Again, another little thing I took for granted every day, now becoming an incredible blessing that I can't be thankful enough for! I took a cut out of the picture so you can't see my messy bathroom - lol! I was able to take a short walk outside with my husband in the beautiful sunshine, and while I looked down at myself my husband read my mind and reassured me that no one would be able to see anything - the dress hid it all! How freeing! Today was my first day with the home health nurse. She showed up late and seemed very unsure of herself. She asked me what I wanted to do, and I just stared at her and said, "I have no idea! What are we supposed to do?" She proceeded to change my bag but gave me no instructions on how I should do it myself. She took my vitals and had me sign a TON of paperwork, said she would be ordering the supplies I needed, and then she was gone. Well, that was weird. She was nice and all, but I got the feeling she wasn't as experienced as I would have liked. Not sure what to do about that. Maybe I'll call the director on Monday. I've been really careful about trying to eat non-gaseous foods, and so far, that had been working. Later in the day, though, I started feeling some pains in my stomach and it seemed to tighten up. I took some Tums and a Zanaflex, and that seemed to help a little. Overall, I think I've been healing nicely, but it is a slow and steady process.
I'm still feeling pretty fuzzy from the anesthsia! I woke up a couple hours after I went to sleep and my urostomy bag is FULL! Why is it not draining into the night bag? So I get up to inspect and find that I never opened the blasted valve on my bag!! Note to self - ALWAYS open the valve when you hook up to your night bag! Ugh! So once I do that it drained and I was able to go back to sleep. Then I wake up in the morning realizing my vaginal discharge had leaked through the pad I was wearing (thankfully I had a waterproof pad underneath me on the bed so none of the bedding got messed up), and so I just needed to clean up. I had planned on taking a bird bath today and asking my husband to wash my hair somehow, but after standing in the bathroom feeling so very indecisive I finally just went for it and got in the shower. It felt so incredibly good to wash my whole body like that for the first time in over a week! But it was pretty exhausting, too! I had to dry off fast, don my robe, and make a bee line for the bed to rest up for the hair drying and hair curling phase. Another thing I'm realizing is that pads are not enough for the fountain of drainage coming out of me, so my precious husband went to the store and bought me adult diapers. Once I had those, I felt like I had a new lease on life! Those things didn't leak at all, and while I still had to change them every 2-3 hours I didn't have to worry about them leaking, praise the Lord!
While I was resting, at 9:51am I got a call from my doctor's office. I answer, and it's my doctor! He proceeded to tell me he had just received the results from the pathology on my bladder and wanted to share them with me. Because I had actually had a negative cytology (even though I had had positive biopsies) I had a small question mark going into the surgery if we were actually removing a non-cancerous bladder, and the doctor said that was a possibility, but even so, with the fact that the cancer keeps coming back he would still recommend it. Well it turns out the pathology showed the bladder had multi-focal carcinoma in situ on the posterior wall, right lateral wall, left lateral wall, anterior wall, and dome, but negative for invasive malignancy. Basically, there was cancer all throughout the lining of the bladder. This was so very confirming that we made the right decision! But even better than that was the news that all margins were clear, all lymph nodes were negative, and so he said, "Jodie, you are cured of cancer!" Wow! Again, SO much to be thankful for!!
My next dilemma fails by comparison to my whole cancer situation, but it was a big question for me, what in the heck was I going to wear today? We had people coming over to pick up a kitten (the 5th of 6 kittens we had to rehome from our 4th and last ragdoll kitten litter), so this was an important question. I rifled through my closet and came up with some overalls and a t-shirt. You could pretty much see how swollen my belly was and I felt like both the bulge from my urostomy bag and the bulge from the JP drain and the bag on my left side were pretty noticable, but what other choices did I have? Not anything that I could see as I stared at the clothes in my closet! My poor choice was evident as the people came in and looked at my face and then their eyes immediately dropped down to my belly - ugh! Not good. Oh well, they stayed for about a half an hour and I stayed in that dreadful outfit for a while longer until I realized just how incredibly uncomfortable I was, so I changed into my PJs. Well, this is a strange feeling to not have anything to wear in public. Can't go out for a walk in my PJs (well, I guess I could, but my self-respect wouldn't let me).
I went ahead and curled my hair, so at least I could feel good about that. I spent a lot of time just sitting and staring. I thought I would come home and watch movies or do some emailing, but as my Grandma used to say, "My get up and go, got up and went!" I just wasn't motivated to do much of anything! Totally not like me at all.
I was, however, still wondering about when the home health care nurse was going to come see me. I thought it was supposed to be today? So I called there and was told it would be tomorrow, and that I would be hearing from the nurse with a timeframe.
At about 5:00pm I got a text from a friend who was aware of my clothing dilemma, "Hi Princess! I've got some clothes for you to try ... may I drop them by?" Are you kidding?? PLEASE PLEASE PLEASE! But I simply answer, "Would love that!" So I sit and wait for what felt like forever, but just a little over an hour later she makes several trips to her car and drops about 30 dresses on my couch!! What?????? Are you kidding??? Oh my goodness, these are PERFECT!! I'm beyond grateful! She asks if there is anything she can for me while she's here, and I start to say that I can't think of anything and then I remember my hairy legs! Yes - would you mind shaving my legs? Not at all, she replies! She notices my toenails need painting so she proceeds to do that, too! I'm beginning to feel like a new woman! I have clothes to wear, shaved legs, and toes painted! Grateful beyond words!!!!
Oh my - Thanksgiving Day and I'm SO ready to go home! I wake up early and ask a nurse to plug in my automatic curling iron and please get out my mirror and brush from my computer case and put it on my tray table. I want to look bright and chipper when the doctor comes in! I proceed to curl the front part of my hair, but tucker out and can't finish the back. No worries - that part is on the pillow and no one can see it! After I finished curling the front and sides, I put some make up on, and proceed to begin the waiting game. Tim comes early at like 6:30am, and we wait together. The doctor comes in around 8:30 and looks at everything and says he would like to send me home but he doesn't like how much it is still draining around the opening of my JP drain (yeah, me neither - the nurses are still having to change the dressing like every 2 hours). He finally gets an idea I wish someone had thought of days ago. He gets a urostomy bag, pokes a hole in it, threads the JP drain through the hole, secures the urostomy bag to my body, and voila, now it can drain in the bag and I can empty it just like I am emptying my bag of urine! Tada! Let's go home. So we wait for the paperwork and sign offs. I turn on the Thanksgiving Day parade at 9am while we wait. 10am comes, and we're still waiting, and then something dawns on me and I look over at Tim and declare - I have no clothes to go home in!! Yikes! So he grabs a bunch of stuff from the room that all needs to come home including several flower arrangements, and beelines it home and picks up a dress I had told him I wanted to wear home from the hospital and drives back to the hospital. Now it's like 11am and we're still waiting. I go ahead and get dressed, and realize even this dress is really not going to work in the near future, but it'll have to do to get me home. I put my sweater on over it and somewhat cover all the bulges around my belly. About a month earlier I had met with a lady who had this procedure done a year ago, and she said I would probably need to change my wardrobe. I remember thinking, really? Nah, it probably won't be as drastic as that! Hmmm - maybe I should have paid more attention to what she was telling me!
Well, back in real time, we are still waiting. It's noon now and the parade is over. My nurse is trying to discharge I think 4 patients at once, so she's scurrying around like crazy. She's telling me I really can't go home until I have my Home Health nurse appointment, so she was trying to get that established but was having a hard time since it was Thanksgiving day. I told her I would follow up when I got home. My daughter and oldest son show up to help us carry stuff, and I said I wanted to take a walk down the hallway. So we walk down to the elevators and I sit down in a chair. My nurse finally brings the paperwork I need to sign at around 12:30pm. Finally! She walks me through everything and has me sign everything and then calls for a transport. We wait for a transport for about 10 minutes (by now it's after 1pm) and then I look at Tim and say, "Let's go!" He agrees so we wave good-bye to our nurse down at the nurse's station and hop on the elevator! Free at last, free at last, Thank God Almighty, I'm free at last!! The kids wait on a bench with me while Tim goes and gets the car. He pulls up, they help me in, and then leave for my daughter's vehicle with more of my stuff that needed to come home. We arrived home at 1:34pm, and I remember feeling so incredibly thankful to be walking into our home on that particular Thanksgiving day! I wanted to be out in the living room with everyone so I rested on the couch, dozing off and on. We had a dear friend from church who had already volunteered to make our family a Thanksgiving dinner (while she was also making one for her family and out of town family guests), so at 4pm her husband and daughter showed up bringing dish upon dish into our home. They brought an organic turkey, and mashed potatoes and gravy and a sweet potato casserole and crescent roles and 2 different desserts and home made cranberry sauce and probably more that I'm forgetting - it was unbelievable! Our 4 kids, my husband, and myself sat down to the most thankful of all Thanksgivings for me! This was my first meal since Tuesday the week before (over 8 days) and while my taste buds were definitely a little messed up, food never tasted so good! Another thing I have taken for granted every day!
I actually remember several things about this day. First, I remember my sweet friend, Holly, coming to take care of me so Tim could drive to Lakeland and pick up one of our sons from college for Thanksgiving break. First, she took me on a walk outside. I really wanted to feel the sunshine, so she dragged a wheelchair with us in case I needed to sit down and away we went. I walked the whole way, but then used the wheelchair to sit in the sun. I remember tears just streaming down my face as I raised my face to the sun - it couldn't possibly have ever felt that good before! When we returned to the room, she knew how incredibly disgusting I felt, so she devised a way with the wheel chair backed up to the shower in my room (that did not have a detachable shower head) for me to sit back in the wheelchair while she used a cup to wash my hair! There were such knots in these locks from being in bed for almost a week without it being washed that she had to keep trying more and more conditioner to get the knots out, but she was fast and efficient and tenacious, and before I knew it my hair was clean and tangle free! What a huge blessing! We used these large body wipes to clean the rest of me, and I started feeling like a human being again! My husband arrived with our son, Noah, and took over so Holly could go home. We visited for a while, and then they also took me for a walk outside. Once again, I found tears streaming down my cheeks at the beautiful feeling of the warmth of the sun on my face. Another thing I have taken for granted every day! I don't remember much about the rest of the day, but I'm grateful I remember these highlights - so much to be thankful for!
Again, don't remember much of this day, except for my doctor coming in around noon and saying he was sorry to inform me but I was going to have to undergo another surgery. I remember asking, "When?" To which he answered, "Now." Within an hour I was under anesthesia and under the knife (no robot on this one). This could certainly be chalked up to another thing I hadn't expected! Again, don't remember much about it. I believe he came in later that day (or was it tomorrow?) and showed me a picture of what he found after he opened me up. The end of one of my ureters had necrosed and died. He said he had never seen that before. The picture showed all this pink and healthy looking tissue and this white line (the necrosed ureter) running down the middle of it all. He said the ureters get their blood supply from both the bladder and the kidneys, so when the bladder is removed they have to obtain their whole blood supply from the kidneys. Evidently the blood supply for the one ureter wasn't enough from its correspondng kidney to keep the very end of it alive, so it died. He had to section it and reconnect it to the stoma. This surgery evidently only took 1 hour and was immediately successful, so that was great! Now I could really be on the road to recovery!
Again, another very fuzzy day, just barely being aware there still seemed to be a problem. I think it was in the middle of the night they took me down for an xray, and then again for a sonogram (I believe). I was still so very out of it. I don't know at all what we were waiting on - I just knew I was still npo and I still needed my mouth swabbed with that little sponge and I was at least allowed ice chips. I remember there was a nurse that came by every 4 hours to take my vitals, and a phlebotomist that was taking my blood once a day. I was still encouraged to walk, and there was even a physical therapist or an occupational therapist that came by and instructed me on how to get up from the bed and how much I should be walking and how much I should be staying out of the bed and sitting in the chair in the room. Then my regular nurse was taking care of changing that dressing around my JP drain and making sure I had ice and a small cup of water with the swab in it. Other than that, I really had no idea what was going on.
I really don't remember much about this day at all, so I'm going to take this time to give kudo's to my amazing, rock star husband, Tim! He was taking care of everything, and did a fantastic job at taking care of me! He spent the first 2 nights with me getting barely any sleep, and then wisely he's been going home at night and getting some rest but coming back and being with me pretty much all day. He's been awesome! The one thing I do know about this day is that they still had me on NPO (Nothing to eat or drink) which they had put me on I think Saturday. So I had IV fluids but Tim had to swab my mouth with a sponge periodically when it felt especially dry. Obviously, things were not progressing as planned, but I was so out of it I didn't really know what was going on. Another thing I noticed was that my left thigh was numb. Another thing I didn't expect. One thing is becoming blindingly clear - I really should have done more research before undergoing this type of life altering procedure!
The doctor on call (not my regular doctor) shows up in the morning and says it appears there is a blockage in my stoma, so he irrigates the stents and things start flowing again. And flow they did. The JP drain was draining so fast they had to hook me up to some type of suction machine to keep up with it. A Jackson-Pratt drain (also called a JP drain) is a closed-suction medical device that is commonly used as a post-operative drain for collecting bodily fluids from surgical sites. The device consists of an internal drain connected to a grenade-shaped bulb via plastic tubing. So this tube with a bulb on the end is coming out of the left side of my stomach, with my stoma and urostomy bag on the right side. The hole that the JP drain is coming out of is also draining, so the nurses are keeping gauze on it and changing it every hour or so. Everyone is telling me how great I look (I have olive skin so my color must have looked better than they expected) and that I was doing great. But I really wasn't doing great. I should have been getting ready to leave the hospital the next day (Sunday) or Monday, but such was not the case.
Well, it appears there were more than 4 little holes for the robot involved in this operation. I think there were actually 6. Plus, I'm realizing I'm draining from 4 places - the urostomy bag, that JP drain (what the heck is that and why wasn't I told about it), the hole the JP drain was coming from, and from my vagina (what?)? My stomach is feeling really tight and painful, and pain meds and muscle relaxers are barely helping. My urostomy bag got changed in the afternoon, and I started noticing that all the drainage kind of stopped happening (apparantly unrelated to the bag change) and the tightness in my stomach got worse and worse. By midnight I was calling for the doctor, who said basically he'd deal with me in the morning. So the nurses kept me as comfortable as possible through the night.
I have been feeling very compelled to share my cystectomy journey in the hopes of helping others who have to go through this! Honestly, I had NO idea what to expect, and with me usually being a planner I discovered there were a LOT more things I could/should have done to prepare myself for this crazy journey ahead! I plan on doing this for 30 days straight, and then we'll see after that. I'll be writing some of this in arears, so to speak, as I catch up to my current time of 10 days post-surgery. But I will date my entries with the date I am writing about, and once I'm caught up, it should be current date. So here we go!
Today was surgery day. We arrived at Tampa General Hospital at around 9:30am for robotic surgery (supposedly consisting of 4 holes in my stomach) scheduled at 12:25pm. This was supposed to be about a 5 hour long surgery, with 3-5 days in the hospital and then a 4-6 week recovery. After checking in and waiting around a LOT, surgery finally got underway sometime after 1pm. I think the surgery lasted right about the 5 hours long it was expected to, and the surgeons came out and told my husband and daughter that everything went great and that I'd be in recovery for a bit and then they could come back and see me. Evidently, they kept being told it would be 'just a bit' before they could come back and see me, and I think over 2 hours later they were finally let into the recovery room. I had an ng tube coming out of my nose - didn't expect that! I also had what is called a JP drain which is a tube with a bulb on the end of it coming out of the left side of my belly - didn't expect that either! And I was vaginally draining like a waterfall - didn't expect that as well! I was mostly out of it so I don't remember very much of this day. They finally took me to my room and what would become my lovely abode for a bit longer than we expected. Stay tuned!