Chub and the Giant, Gold Hootie!

For those of you who have ever seen the episode of "Everybody Loves Raymond" where Marie, Raymond's mother, learns how to sculpt, and she makes this sculpture that very much looks like the female anatomy, you'll certainly understand this!


John and I made our way to the "Chub" O'Reiley Cancer Center for my appointment on Wednesday. Yes, his name was CHUB! I know, I know....it's almost too much to take in...but just hang on until you read the rest of this crazy story! We rode up on the elevator, the doors open, we step out and look around to see where we were supposed to be going, and as we turn to our right, all of a sudden there is this giant, 30 foot, gold sculpture of what looks like a woman's hootie, right in front of the doors we're supposed to go into, which is called "Women's Oncology"! John and I both immediatley looked at each other and started laughing. So, John, of course, started his comedy routine. He acted like he dialed a phone, and in his very best "hick" or "coo" voice he spoke into his imaginary phone saying "Uhhhhh yeeuh, this is "Chub" ovurh at duh cancer center, I need that giant pooossay to be about 35 feet tall, and about 15 feet wide, with the clit-tohr-us about 30 feet off of duh ground! Ya'll got that???"


I was laughing so hard I thought I was going to pee myself. However, I was so nervous about the appointment, that I was about to pass out, so, we went inside and tried to become more serious, so as not to disrespect any other patients that were perhaps not so easily entertained. Thank goodness, there was only one gentlemen waiting in there for a family member. 


We discovered later, after I saw that there was a plaque down in the flowers underneath the giant, gold, female genitalia, that it was supposed to be "the eternal flame". I told John, "I do believe that was an unfortunate choice of placement for that particular flame!"


Okay, so...I go to the exam, which was the most THOROUGH exam I've ever had in my 25 years of going to hootie docs. Holy, moly was it thorough... John came in for the consult afterwards. 


Before the exam, when the nurse took my vitals, my blood pressure was high, which it NEVER is, my heart rate was high, which it NEVER is, and I was shaking like a leaf....now let me put this all into perspective for you. I see my rheumatologist every 3 or 4 months, and my primary care physician every 4 months. I have bloodwork done every 2 months for my rheumatologist and bloodwork for my primary care physician every 3 months. So, I'm checked very often for all of these things. The fact was, my terror about what I was going to find out, was causing my body to react and I could not get it under control. My body was betraying me (again) and that's the first time in my life I haven't been able to   breathe, relax and command myself to calm down. It just wasn't happening, and that really bothered me... I'm 45 years old, I've performed in front of people in Carnegie Hall, I've conducted many, many concerts through the years, I've done public speaking to large crowds of people, I have saved the life of one student who was choking on a piece of candy on a school bus, I've had students go into full blown asthma attacks on the marching field and turn blue while I'm trying to get them to take their inhalers (yes, they both happened at the same time and I had both inhalers in my pocket and John was up in the top of the stands across the field) I've had two students who have dropped to the floor from seizures while talking to me, I've seen numerous car wrecks that I've helped out at, and I have never, in any of those situations, ever, not been able to control my physical reaction to stress. First time for everything, I guess! Okay, wait....the two tornadoes John and I have been in....I was panicked then.


Here are the things that I know about my situation, besides the fact that it sucks.


I have endometrial cancer, endometriosis and a large fibroid tumor on the outside of my uterus. I also have an umbilical hernia that I had no idea was present. He will stage the cancer during the surgery. He will try not to take any of my lymph nodes so that I won't get lymphedema (the extreme swelling of extremeties in the absence of lymph nodes.)


The surgery will be abdominal instead of vaginal, because my uterus is enlarged, my hootie is small and those two don't make for a good surgical outcome! He will check to see if my appendix, gallbladder and any other non-vital organs look like they need to be hacked out of me so as to save me ever having to go through this again because of the R.A. (I have to go off of my RA meds so that my body can heal and it will also lessen my chances for infection. The RA meds compromise the immune system, which is already compromised because of the autoimmune disease. At least, that's how this RA patient understands it.) Basically, it's a vicious circle of disease and misfortune! 


I've been off of the Methotrexate injections for almost two weeks now, and Monday it will be two weeks for the Humira injections. I can take my oral meds up until the day before which will be Thursday, July 5th. Here's the kicker...I had a flare up in my left hand on Monday & Tuesday....the pain was so intense that even with three Tramadol in me, over the course of 12 hours, the pain wasn't touched and all the pain killer did was make me sick as a dog. I had to sit up all night because sleeping with pain that bad doesn't happen. So, my rheumatologist started me on a tapering dose of Prednisone which will be finished in 4 days. I won't be able to start back on my injections until 3 to 4 weeks AFTER this surgery. My hand is completely fine now, BUT, right now, this very moment....my left shoulder is starting to give me fits...EVEN on Prednisone. THIS is going to be the worst part of this entire cancer thing....is going off of the RA drugs...I think. I HOPE! At least, with the RA, I KNOW what's coming. I just hate to put my family through it. I can't help myself when I'm in that much pain...if I have to move that particular body part that is flaring, I cry and sometimes scream out in pain...and I've seen the faces of my family members when that happens. I hate it. They hurt for me, and I don't want to put them through that. This whole situation just sucks. My oncologist/surgeon gave me a script that will help, but I try to avoid taking any pain meds unless it is absolutely necessary. Well, guess what....I think the necessity has shown it's ugly face.


I want to go back to the giant, gold hootie. I wonder if the giant, gold hootie-from now on to be known as the GGH, was there BEFORE that became the women's oncology department...or if some dumbass put it in afterward. I mean really.....I know that John and I aren't the only ones who have noticed it....because when we went to the hospital for all of my pre-surgical testing, my nurse completely agreed with us and said that she'd noticed that too! So, it's not just us having dirty minds! Unbelievable. Anyway, I'm glad that the GGH was there, it helped me kind of come back to my pre-cancer self even if it was just for a little bit. I will be eternally grateful for the eternal flame that will eternally be known in this blog as the GGH!


K.P., if you can write a country song for me about the giant, gold hootie that made me laugh....I'd love it!


Okay, everyone....have a great night. Type at ya again soon!:)

Cancer Update 1

Okay, folks.

John and I went to the oncology appointment today. After a quick exam, he met with us and here are the basics of what we know right now:

I have Endometrial Cancer, and he still thinks it's contained in my uterus. The CT scan and his exam leads him to believe that it probably hasn't migrated anywhere else yet! This is great news!! :)

Although he would not commit to any kind of a stage diagnosis yet, he seems to think that we may have a good chance of not having to do much or any radiation or chemo.

Next Friday, July 6th, I will have a complete hysterectomy. I'll probably be in the hospital for about a week afterward. Once the entire surgical team feels that I am out of the woods as far as infection and other similar possible complications, I'll go home and take about 6 weeks to recover.

Those are the basics! John and I are completely wiped out. As you know, it's been a pretty tough week! So this is all I've got tonight! I just wanted to make sure that anybody who follows this blog got the information as quickly as I could possibly get it to you! Thanks for all of your prayers and well wishes!! :) I'm really sorry that I didn't put the energy into the entertainment component that I normally do...I bet I'll be more up to that tomorrow or the next day, so stay tuned!! :) 

By the way, if I forget to tell you about the sculpture outside my oncologist's office, please be sure to remind me! Who would ever have thought anything about cancer could be hilarious...but this story is!!!!!! :) Love to all. Goodnight!

The Ultimate F.U.

Well, the title of my blog is certainly true for me for the last three days. Mid-life scariness is not only the title of this blog, it's also the multi-word description of my experiences starting on Wednesday with my Mom's surgery.


This isn't going to be a sad sack read, just a quick run through of the facts with a funny spin put on it... so, pull up your big boy and big girl britches and hang on for the ride!


First, a brief explanation of Mom's surgery. Two years ago, she had a Cholycystectomy (removal of gallbladder) but after that surgery, she was still having lots of pain, indigestion and nausea. Long story short, they left the CBD (Common Bile Duct) untouched instead of cleaning it out and removing any stuck gallstones. After much pain and bullshit for my 83 year old mother, she had the CBD cleaned out on Wednesday and a stint placed in it for the next 4 weeks, only to go back in and have it removed on July 18th. Now, this is what a tough, old bird my incredible mom is...that CBD is supposed to be 4 mm wide...HERS was 16 mm wide and the gallstones were the size of quarters and half dollars...I saw the pictures...NO WONDER she's been in soooo much pain. They looked like little watermelons. Seriously. Should never have happened to her. EVER. Anyhoo, I went home to stay with her. It went well, she's doing VERY well. I'm glad for her now, but I wish for every single time she was in pain or sick since that first surgery, that her surgeon who did the first surgery would have something scary happen to him...like... when he goes to take a piss, it's the color of one of Lady Ga Ga's wigs, then when he drives up to the ATM in his Porsche, he can't get his money because someone who is smarter than I am, stole his identity and emptied his accounts and left him with 25 bucks...then when he drives home to try and figure out what was happening to him, he steps in a big pile of dog shit, slips and falls in it and the neighbor's REALLY BIG dog who had shit in his yard to begin with, runs over to him and starts humping him while biting the shit out of him. That's a lot of "shits" in the last section....but it was necessary for the story. Yes, I have an active imagination. :)


Okay, so first scary incident...the surgeon told us that Mom's surgery would be about 30 to 35 minutes, well, and hour and 45 minutes later, (yes, we were all nervous) the nurse comes out and says "Mrs. Sullivan's family"...we all nodded and sat up, "Come with me, now, please." So, my middle brother, my older sister and I got up while sharing a glance that said "WTF???" We get in there, and Mom is WIDE AWAKE, talking to us like nothing had ever even taken place! I said..."Mom???" and at that time the nurse said " I wanted to get you guys back here before the doctor left...he's on his way out of the building and I wanted him to talk to you while he was telling Mrs. Sullivan about the surgery. She's doing very, very well!" WHEEEEWWWWWW....Thanks for scaring the shit out of us and don't pay any attention if I trip you while you're walking briskly through here. Just sayin'... Mom was awake through the entire thing. They didn't tell us- or HER about that part of it. But she said it was fine...they had enough drugs in her that she didn't feel anything and wasn't freaked out by the tube down her throat. Like I said, she's TOUGH! She'll be 84 on Aug. 8th....awesome!


So, Thursday-late afternoon, I'm sitting with Mom in the living room talking with her and thinking to myself how relieved I am that she is doing so well, and actually felt like sitting up with me instead of laying in bed. As we were shootin' the breeze, my cell phone rang. It was a 417 area code but not a number I recognized, so I figured it was one of John's students who didn't have his cell number, which happens all of the time. So, I answered it.


Scary incident number two: I answered the phone and it was my gynecologist, or "hootie doctor" as the women in my family refer to them. I was surprised, because I have his number programmed in my phone, and when it rang, it certainly was not his number. "Mrs. Devos, I've been trying to get in touch with you. I really don't like telling this kind of thing over the phone, I'm really sorry, but the results from your biopsy show that you have endometriosis and cancer, but it's not Ovarian cancer, which is good. If it was Ovarian cancer, many times that is caught too late, but yours is not Ovarian. We will need to do a full hysterectomy and hopefully, we've caught it in time and it hasn't already begun to spread."


(my ears are getting hot, my heart is pounding, I'm going to puke....if I didn't know better, I'd think I was having a good drunk, but....I'm sitting here with Mom, and I don't have a cocktail in my hand....and I'm NOT HAPPY. What did he just say???????? WHAT DID HE JUST SAY??????????)


All I could muster up the courage to say was a timid, quiet... (yes, I was actually quiet you smart asses :) "okay????"  And he continued..."we will need to do a full hysterectomy within the next couple of weeks. I've already set you up with the Oncology department with Dr. So and So, he's one of the best there is and specializes in gynecological cancers." (WHAT DID HE JUST FUCKING SAY TO ME?? MOM is right here.....what am I going to do.....I can't let her know, oh wait....there are tears rolling down my cheeks and she can read my mind anyway....she already knows. HOLY SHIT.....why did I answer this in front of her, I mean, of course I'd tell her when I could be calm about it, but not this way, she doesn't deserve this...AND she just had surgery herself, yesterday. What a fucking nightmare. Somebody, please wake me up....this can't be happening like this....John is not here...JOHN....HOW AM I GOING TO TELL JOHN????? Oh no, I don't know what Dr. L has just said for the last few seconds or minutes...has it been hours???...STOP THINKING SOOOO LOUDLY and ask him to repeat it....Carolinn!!! Wake up and ask him to repeat what he has been saying to you!!!!!!!) "Dr. L, Ummmmm, I'm not sure I heard the last part of what you just said, I'm in shock...this is the last thing I expected... and if you could just tell me again....I don't have Ovarian, right?" "No, you don't have Ovarian." (My mom physically cringed and looked down at her hands that were folded in her lap) "I'm sooo sorry to do this over the phone. We will need to do a catscan and bloodwork and then Dr. C will tell you what is going to have to be done to get this taken care of." (I pulled myself together enough to ask...) "Okay, can you tell me what the surgeon's name is again and what I am supposed to do?" (Besides vomit, pass out and shit myself:)


Now, I have to say to those of you who know me, that even though I'm loud, pretty mentally tough and generally take the bull by the horns, in that instant of my timeline of life, I was looking for a little, blue x to scroll over to show an "edit or delete" button in the air around me...alas, if it was there, it was invisible to me. The next few minutes of that event are a blurred, quick, chain of events that seemed to take hours to play out. All I can really remember is that horrified look on my sweet mom's face and the sound of her voice saying "This is not supposed to happen to you, I wish it was me instead." It was useless to try and pretend like I was brave. I wasn't brave. I was horrified. I was horrified by the fact that I was the one with C. I was horrified by the fact that Mom found out that way, I was horrified that I was going to have to tell my husband, who lost his mother 4 years ago to C and his father just a few weeks ago to something else...that I, his wife, his best friend- was in trouble. Then, there are my sisters, brothers, sisters-in-law, brothers-in-law, nieces, nephews and my friends. The air had been sucked out of me. And the thing that had sucked it out was the C word. The C word that had killed my Dad twenty years ago, and my mother-in-law almost four years ago. I'm scared, confused and a little pissed off. I guess the R.A. and losing my career -only 18 years into it- wasn't enough...oh hell no....let's REALLY test this midlife broad and see if she can make jokes about this little string of terrible events.


Well, guess what....this is the ultimate F.U. to the disease world. I always used to say during Aunt Flo's monthly visit that I wanted to rip my ovaries out and make them into earrings....NOW, I really have the chance to do that!! The fact is, it's in me, yes-it's horrible, yes-I'm freaking scared out of my wits that it has spread, yes-I've sobbed on and off for the last three days, yes-I don't want to die...but, I'm a lot more calm about it all now, three days later. I've done lots of research as has everyone else in my family now, and even if I'm in stage 3 or 4, the prognosis is still pretty good. Here's something funny....I still am not sure exactly what type of cancer it is....uterine, cervical-hell, it could be crazy bitch cancer and I wouldn't know because I was too dumbfounded to ask- maybe...actually, I'm sure he told me, I just don't remember because I had a massive brain fart at that very moment. And a justified one, too!


So, here's the time table as I now know it. Monday morning I will have a catscan and bloodwork done. Wednesday afternoon I will meet with my oncologist/surgeon so he can tell me all the good news and schedule the surgery after which we will commence with the jewelry making session. All I have to say is....I hope my surgeon is HOT. I mean really, if I have to be going through all of this crap....at least give me some eye candy to look at for the few times I'll be seeing him! There's got to be SOME pleasantness in all of this horror! 

Some other good things...I will save A LOT of money on feminine hygiene products, we'll get to use the Aflac cancer policy we've been paying on, AND, OH... YES....I'm sure I'll lose more weight once they get all of these disease ridden, useless parts out of me! Just trying to find the silver lining, people....work with me, here.

I'm taking suggestions on earring styles for my ovaries. Feel free to submit sketches. The winner will receive an all-inclusive, paid trip to nowhere! 


One of my biggest concerns is, I have to go off of my RA meds to have all of this done, which means I will more than likely be crippled and in LOTS of pain again for a few weeks until I've healed and I can start back on my meds. I will be relying on family and friends a lot, and I'm soooo very thankful that I have them. All funniness aside, I know this is very serious and I know all of the possible outcomes. It's okay...I'll fight it no matter what. We'll deal with it as it comes.


After this is all over....I'm throwing a big-ass party, like the ones I used to have all of the time. Who knows, maybe the cops will even show up. Not a party til the cops show up to tell you to keep it down. Maybe I'll rent a hall somewhere and we can all meet, dance, sing, go do fun things, stay in hotels, and make a weekend of it! You old party goers know who you are!!! :) 


This is to all of my clean mouthed friends-sorry about all the cussing in this post, but you know me...and you know what I'm capable of...my dad REALLY was a sailor, you know. Navy. 


Okay. So, there it is. I'm now ready to curl up with John on the couch and watch a movie on Netflix, eat some popcorn, drink some unsweet tea and enjoy the rest of this weekend! I suggest the rest of you do the same!! -only with your spouses or significant others, not John. :) Love and Hugs to you all, and thanks in advance for the well wishes as we jump in with both feet into this next Midlife Scariness. :)


Carolinn


P.S. John found this recording of Chuck Mangione and Esther Satterfield performing "Land of Make Believe". I didn't even realize there were lyrics to this incredible piece of music. Then, I listened and read the lyrics. It pretty much describes how I'm feeling right now. The first verse.......well, you'll understand.