Report!

I can’t believe today marks 8 weeks since I had my radical cystectomy! In some ways it seems like years ago and in others it feels like just the other day… I don’t have anything too ground breaking to reveal but I thought I would write a quick “8 Week Post-Op Report” (I always wanted to be a newscaster when I was little so pretend like really important news music is playing while you read this…)

In some ways I am making so much progress, passing up recovery benchmarks, and jumping over hurdles daily but in other ways I feel like there is no end in sight to this recovery process.  

Physical therapy is intense and really hard but as my Dad reminded my Mom so helpfully while she was in labor “no pain, no gain”. I am going twice a week and I am so blessed to not only have the most amazing physical therapist in the world but she just happens to be like 5 minutes from my house! She really wants to help me get through this recovery and she pushes me to do so but she also knows when I need to stop and gives me lots of rests.

You wouldn’t believe that the things she has me doing hurt so bad but they really do. She told me to stop putting myself down but seriously… A regular person would laugh at the things I’m pushing my hardest to do.

Physical therapy has many purposes for me- to help rebuild all my muscles, strengthen up, and increase my endurance after over a year of basically being in bed and recovering from surgery.

It is also to help retrain my body and my brain after 15 years of chronic pain. She said it is physically impossible for me to stand up straight at this point because my shoulders and sternum are so tight after years of being so tense! I even have to relearn to walk because my body still instinctively curls up and tries to protect my body from pain.

As I progress we will probably continue to find problems and then matching solutions but right now it’s pretty basic. I’ve been riding a recumbent bike, walking, working on my balance, and she has been using her special physical therapy magic to gradually stretch and relax my muscles. You would think it would just be my tummy muscles but even the muscles surrounding my collarbone are so tender!

So PT days are hard days, I work and push hard. I usually spend a few hours with ice or heat in bed afterwards but it’s getting easier to cope with. My body is relearning things it hasn’t known how to do in 2 months, 6 months, a year, or even 15 years… This will be the longest part of my journey to recovery and it could be years until I’m in the kind of shape I always wished I could be in and  able to do things I've always wanted to do... i.e. be able to walk in a straight line or open a jar…

My whole entire body is feeling all the changes as I start pushing it to do what it is meant to do. Lately my lower back, feet, abdomen and legs have been getting the brunt of the pain from working muscles I haven’t used in so long. I have fallen a few times after pushing my body, my dang legs just get to a point where they can’t hold my own weight for another moment. 

Another hard (pun intended) part of recovery has been my bowels adjusting to life without the piece of intestines that the doctor recruited to be my conduit. For weeks after surgery I had horrible diarrhea and I was so miserable but it didn’t take too long for it to turn into severe constipation. A couple weeks ago I had my post-op CT scan which showed I was full to the brim! 

Between not eating, low activity, all the meds, and dealing with so many changes I’m not really surprised my body is throwing somewhat of a hissy fit about the whole thing. I thought as those things improved so would the digestion but that has not been the case… I have been taking an excessive amount of medication to help with this problem but nothing is doing the trick! I literally look 5 months pregnant. I recently complained to my Mom that my tummy was so swollen I didn’t even have fat rolls anymore! I just had these little indents that made me look like a snowman… After a few minutes of her hysterically laughing and calling me Olaf I realized she really needs a break…

Anyway, the constipation has brought on a whole slew of other troubles including water retention making my hands and feet swell as well, extreme cramping, loss of appetite, extra pain around my fresh incisions that are being stretched, and increased nausea… Not to mention looking like a snowman and not having any pants fit…

Another unexpected complication has been in my whole pelvic floor/ vulva area. They removed my urethra, which meant they had to reconstruct my vagina because of course the vagina’s ceiling is the urethra’s floor. Even though it’s been almost 2 months since surgery that area is still taking its sweet time to recover. I think part of the problem is that urine is a sterile fluid that cleans the vaginal area each time you urinate so when you suddenly stop doing that the warm, damp area becomes the perfect place for bacteria. The whole area down there is just absolutely raw and cut up… I try to remember to tidy up throughout the day and shower in the morning and night but some days I just get lazy or forget and then I pay the price. I’m going to my gynecologist this week and I’m hoping he might have some ideas for me.

I am also still adjusting to life with the stoma and the urostomy. The swelling from the constipation has made my stoma much shorter and it is even starting to recess into my hard tummy. Hopefully when I get that under control it will turn into it's dang near textbook perfect stoma. The area around the stoma is finally starting to heal but still bleeds regularly and then stings incredibly when the urine touches the fresh openings. On top of all that, it’s been really hot here in the Pacific Northwest lately which is making the skin under my wafer sweat, making the adhesive even stickier, making my skin even more irritated. I was able to cut the wafer down a bit to let the irritation heal but I obviously have to leave some so it stays on… Really all I can do is wait this heat wave out.

Lastly... I have had chronic nausea and vomiting for years but it is always much worse post-op and this surgery wasn’t an exception. I was so sick in the hospital I was refusing narcotics just hours after this massive surgery so my doctor decided to put me on an antinausea medication that other doctors had recommended I stay away from. I have had so many violent allergic reactions to anti-nausea meds over the years doctors are always pretty paranoid when I beg them to give me something for nausea and vomiting. I’m so thankful my surgeon wasn’t such a pansy and was willing to take the risk with me.

It’s been almost 2 months since I started on that particular drug with much success and I was so thankful to be pretty much free from the nausea and vomiting that has plagued me for so long.

That all changed yesterday. I took my usual dose of phenergan and dilaudid in the morning and within an hour my throat was starting to feel weird. I didn’t think much of it at first but it got worse every minute. Pretty soon it felt like an elephant was sitting on my chest and pushing his giant feet on my throat. I took Benadryl, threw on some clothes and then my husband drove me to the ER. Unfortunately I’m a pro at allergic reactions and know the routine. We got there and they got it all under control pretty quickly with some heavy duty drugs. After things settled down a bit I was much more scared of going back to life without the meds than the reaction I was having.

They said the drug will be in my system for 3 days and I have continued to feel my throat swell up from time to time so I have stayed on top of the antihistamines they prescribed as well as Benadryl. I can’t believe I’m not some kind of zombie but my body has grown such a tolerance to most oral medications.

So I’m dancing the recovery fox trot, two steps forward one step back. I am making progress and if I squint and tilt my head I can see a little bit each day but… I’m not going to lie and say it’s not frustrating and discouraging when I go backwards.

They told me this recovery would be 6 months to a year but for some reason I convinced myself there was no way that could be true. So here I sit, 8 weeks post-op and really disappointed that I’m not water skiing yet. *Sigh* Patience isn’t one of my strengths…

To end on a lighter note… We got our sweet puppy Maja 4 days ago and she has brought so much happiness, love and hope to our household! She has been perfect and in most ways it’s been much easier than I expected! Best of all she seems to love being here almost as much as we love having her here! The pictures don't do her justice! She is a sweet, well behaved, beautiful little lady! 

Our first night as a family of 4! 

She's the best snuggle buddy ever!! 

Titus agrees! 

me and my "kids"

Happy Girl! 

So pretty!

Just a boy and his dog