Challenges Continue

My last post to the blog was just after my hysterectomy. I had hoped I would be back at work now and beginning to walk/run again. Not so. Right now I'm sitting on the couch with a baseball hat on, haven't showered since yesterday, and in general wondering why do I continue to have complications? My breast cancer was not typical and stumped the doctors, and now another bump in the long marathon I've been on.

There are portions of this blog that make me a little uncomfortable to share, but my mail goal in this was to be completely honest about my journey. Here goes...

After I wore a catheter, AKA "Catherina," for the two weeks recommended by my doctor, I went in to have it removed. I was so thrilled to be detached from it. Walking out of her office I was ecstatic and felt like most of my journey was done!

About 45 minutes later, Michael and I were at a strore, buying a treat for me for having completing my final surgery (or so I thought) and all of the sudden, you guessed it, I was incontinent (wet my pants). We left and went home quickly so I could shower and call the doctor. The told me it woud take a short while for my bladder muscles to work and to do "kegel muscles." Most women are familiar with them.

It didn't work. In the middle of the night Michael had to go get me adult diapers. After having a surgery to remove both breasts, I must say, wearing an adult diaper has been almost worse than that. I called the doctor's office again the next day and said "something just isn't right." They told me to come in right away and they worked me into the schedule. Dr. S did some tests and said she could see where I was leaking urine and I would have to have another catheter. Only 24 hours of freedom. She wanted me to see the urologist that assisted in repairing my bladder after it was nicked and created a tiny hole, during the hysterectomy. I was to see him in another 2 weeks.

Next problem, even with Catherina, who I would rather name something like "Bocephus," I was STILL leaking and had to wear the lovely undergarment.  By back hurt extremely bad and I just didn't think it was right that I had continual incontinence even with Catherina. We went to the emergency room and testing was done. Catherina was taken out because they thought it may have been a faulty catheter. Catherina #3 installed. My gynecologist thought I could have surgery the next week to repair the leak. Can I say that she is awesome. She calls me once or twice a week to check on me. I don't think I've ever had a physician call me to check on me.

Next, I saw the urologist a few days later and he performed what is called a cystoscopy. When you say it correctly it's - cyst-os-co-pee.  Yes, PEE at the end of the procedure. Nice. They removed Catherina #3 and then used a scope to look at my bladder. Under no sedation I was able to say hello to my troublesome bladder. It said nothing back. Yes, I may be a wimp on pain issues, but it was awful. We could see the stitches he'd sutured and other areas that looked like they needed additional time to heal. Catherina #4. Two more weeks until I was to visit him again. Now, those two weeks are almost done.

I still have leakage and when I see him on Thursday, my gynecologist said she suspects he will have to do a surgery through my stomach to see where the fistula is. There are different types of fistulas, but they think there is a hole where he stitched my bladder to my vaginal wall. Without being treated it can be very dangerous and life threatening.

I am extremely tired and sleep about 16 hours per day. Dr. S said it is probably associated to the hysterectomy and lack of ovaries. And she also reminded me I've been through a lot in the last 11 months and my body is trying to adjust.

I am trying to adjust. (And after this section I will lighten it up a bit.)

• Adjust my undergarmet (Depends) IS the best, by the way.
• Adjusting to the humiliation of it all, and then realizing it is a dangerous medical situation that cannot be taken lightly.
• Adjusting to the happiness I'll have when I change my grandson's diaper when he arrives in June, and hopefully not my own too.
• Adjusting to dry hands from washing them constantly.
• Trying to adjust to having worn the catheter's for over a month now. I feel like my dignity is completely gone, as if having no breasts wasn't enough.
• Adjusting to no activity. I'm too tired. I thought I could try to get some work done from home and so far that hasn't happened. But, I will concede that it's finally making me rest and I pray the fistula will magically fix itself in the next 4 days.

Here are funny things I've thought of...kind of Denise O'Farrell's Top Ten List:
10) Lisa Rinna, the actress, was at some red carpet gig and she announced she was wearing Depends. It was hilarious to me. Her husband, Harry Hamlin was with her and he said "they poured her into that dress and you cannot tell she has it on." 10a) She was wearing black so of course you couldn't see anything. 10b) She probably had Spanx over the diaper so it could not be seen.

9) I have some unopened packages of a rival brand to Depends. I don't want Michael to go back and ask for a refund - maybe I could donate them to an Assisted Living Center. Or, I could think of other fun things to do with them. Maybe I can be "diaper girl" for Halloween. Uh, just wearing them on my head with sweats...again never going out in public like that.

 8) I've seen one of the Walmart People videos and a woman has on shorts and a catheter on her leg. I thought it was SO gross. That was not, and will never be, me in public.

7)  I will be a pro at this when I'm 80 or 90 and have to resort to diapers once again! Perhaps then it won't be so horrible. 

 6) On those nights I sleep 16 hours in a row, it's actually convenient, I don't have to get out of bed to pee.

5) Remember when we had small children still in their diapers and we would sniff the general diaper to see what was lurking inside, I haven't asked anyone to do that, and I can be honest and tell you after being in the catheter bag for a time, pee stinks.

4) On that same note, I will not be eating asparagus while I still have the cather bag.

3) I love Lance and am strill thrilled to receive his video and a tweet from him, and I love my yellow LiveSTRONG bracelet, but not yellow pee.

2) I had a solicitor come to the door last weekend and he was quite persistent. I had wrapped up in a blanket because I was wearing shorts and I didn't want to see Catherina. The non-public health thought that went through my mind was to whip out Catherina and spray pee on him. I know, NOT appropriate, but I thought funny nonetheless.

1) If I have to wear Catherina much longer I'm going to "bling" her out so she looks prettier. Pink ribbons, rhinestones, CZ. She'll be the best looking Catherina #4 ever.

BONUS: I now can say I've peed standing up and don't see what the big deal is. 

Thanks everyone for your kindness and support.

Surgery Update and INSPIRING Message

It has been just a little over one week since my hysterectomy. It was quite an adventure! I must have jinxed myself because I told my husband Michael over and over again that I was nervous about the surgery and that one of my biggest fears was having a catheter.

On Monday, March 19th, I checked into the hospital at 11 a.m. and then went into surgery promptly at 1 p.m. It was done laparoscopically (which I'm very thankful for), so I have only three incisions. During the surgery, she found my bladder was in a very odd place and adhered to my abdominal wall. She needed to move it to get to the other area to remove my ovaries and uterus, etc., and when doing so, she noticed a small hole in my bladder. Not a good thing. She called a urologist to assist her and he sutured it closed. The bad news is that I have to have a catheter in place for two weeks! I've had one week with it. I call it/her "Cath-erina." Now one week to go.

For people who are wondering why I had this surgery, it was because I have the BRCA2 genetic mutation which puts me at great risk to get ovarian cancer.

I was in the hospital for two nights and am resting and recovering well. I am sleeping SO much! I've had two days where I've slept for about 19 hours without waking...the beauty of having "Cath-erina." The pain is still present, but lessons a little every day. I find just sitting up and chatting with visitors is painful and my pain increases significantly.

Another thing about this surgery, it put me into what is known as "surgical menopause." And, because of the BRCA2 mutation I cannot go on hormone replacement therapy. I am on a medication to lessen hot flashes, but I still have several a day. No fun.

Now, on to the message. I'll insert it now and comment on it later!

My closest family, friends, and co-workers know I am a HUGE Lance Armstrong fan. I've read his book, "It's Not About the Bike" several times, and most recently when I was diagnosed with cancer myself. My husband and I have been watching the Tour de France for 22 years and were immediate fans when he started racing in "The Tour."

I have a friend who works for Lance and he told Lance about my journey through cancer and some of the difficulties I've had recently. Getting the message from Lance ranks up there with my wedding day and the birth of my children.

Thank you Matt and Lance!!