July 2012 Denver

Hi Everyone! I've missed you! I have not been feeling my best and have been wanting to write for a while now! Sorry it's taken me this long to get to it! For the first time since I've started blogging, I actually wrote out what I wanted to say on a legal pad in pencil - 6 pages worth! I just did not have the will and strength to get up off the couch and get to the computer! See photo of Hanz and I doing our favorite thing - vegging on the couch watching TV! Did ya'll know that there is a lady in New Zealand that reads my blog?! Yikes! Wonder if she's seen any Hobbits in her neck of the woods! (Heard the movie THE HOBBIT will be in three parts - cool!) She has a beautiful blog, full of photos of her quilting, gardening and equestrian hobbies!! Check out Poppies and Daisies!

I thought we had the bleeding under control after having been back two weeks from my last embolization, but started bleeding from inside my mouth Thurs. morning @ work. It was just a trickle of blood coming down my chin, so I went to the bathroom to rinse out my mouth . Later that morning I sneezed and started bleeding again. Went home during lunch to brush my teeth and brought that and toothpaste back with me. Soon as Nurses on Wheels came by to give me my mid day IV antibiotic (see photo of cutie RN Robert- see Breaking Dawn wedding poster behind him in my cubicle!) I left work and took Friday off! Unfortunately I bled during Thursday dinner, then @ 4am and then mid morning Friday. Those last 3 bleeds weren't horrible, but not slight either. So tired of all this!

The one good thing is that @ least my wound care visits are down to once a week instead of 3 times a week like before! The last 2 days I've had a fever and decided to go see my Primary Care Physician. He gave me the results of the CT Scan that had been done in CO. The pseudomonous (sp?) infection I have has gone down to the bone. UGH! He hopes the very strong IV antibiotic that I have to have 3 times a day for 6 weeks will kill that infection. The doctor said that antibiotic is what is causing my side effects - weakness, wanting to jump out of my skin, night sweats, irritability, freezing during the day ... are we having fun yet?

Let's get back to CO - Dr. Yakes used 13 cc's of alcohol around my mouth area. I only had to be on steroids 2 weeks for the swelling, so that's pretty good! I can't say enough about the staff @ Swedish! One of the nurses saw that I had the companion book to Breaking Dawn 1 and she is a fellow Twi-Hard! I told her I only have the one sountrack from the first movie, since my budget hasn't allowed for any more than that. She generously made me a copy of her cd for the soundtrack to the second Twilight Saga movie, New Moon! I love it and have played it every day @ work since being back! Then she tells me there is a new tech working there that she feels resembles Taylor Lautner (Jacob) from the Twilight movies - so she went off to get him to come see me! His name is Alex and he was a really good sport! You can't tell from the photo, but his hair is spikey and check out his cute dimple! Celia and I are Team Edward though.

Yes I know Kristen Stewart and Rob Pattinson broke up - darn it all, I wanted them married in real life! That's ok, they'll live forever as Bella and Edward in the Twilight movies! What can I say, I'm a romantic! The Olympics have been a great distraction from that disappointment in my favorite celebrities - as far as I'm concerned, the best part of the Olympics has been David Beckham! He looks so great in a suit and tie! Mark says, "I'm a straight guy and I even think the guy is good looking"! (See photo in case you're not sure who David Beckham is). My sister Celia and I agreed that he should be playing 007! The other great thing about the Olympics has been seeing the Royals! I'm a Royal watcher - in fact, right now one of my friends/co-workers is in London and I asked if she would bring me something Royal or something Olympian. I've since changed my mind and want her to bring me David Beckham! I can dream can't I! Mark and I are both fans of Michael Phelps - heard tickets to see him swim were like $700 and scalpers were selling them for $10,000! Can you imagine? I've always loved the Olympics and can remember when Bruce Jenner won the decathalon and loved the mens gymnastics team that included Peter Vidmar, Bart Conner (now married to gymnast Nadia) Tim Daggett (doing gymnastics commentating) and Mitch Gaylord! Course as kids we saw Olga Korbut and kept up with Mary Lou Retton, Kerri Strugg, etc.

I want to go back a bit and say something about some of the people that help me with my medical needs. The nurses @ Swedish really love their patients. During this last trip I had been a little upset and the nurse hugged me and said, "you're in my heart"! Some have come by just to say hello because they saw my name on the schedule.

The Nurses on Wheels are terrific - super nice and very professional! I have dealt with Robert, Alma(sitting @ desk), Carlie and Melissa! Alma is the best @ changing the needle on my mediport. Robert is a doll and I love talking to him! Carlie is now a neighbor and a real sweethart and I haven't seen too much of Melissa, but she is very good as well!

My wound care group is awesome - there are mornings I am litterally dragging myself for my appt. w/them before going to work and they always make me feel better! One tech knew about my babies Hanz and Bella and lent me a book she had about a dog. Oh! I just finished reading a book called The Dog That Talked to God by Jim Kraus - I enjoyed it alot! Speaking of dogs, mine have already been by a couple of times to tell me it's time to get off the computer! Mark is in Rockport helping his brother Jim w/something, so he's not here to entertain them so I can write! I'm going to take a break and hope I make it back soon!

Ok, Mark is back and making dinner and the kids are happy that their daddy is home, so I have a few minutes to write some more! The next book I had started reading is Jeanne Coopers "Not Young, But Still Restless". She has played the part of Katherine Chancellor on my favorite Soap, The Young and the Restless! I started watching that when I was 12!

Remember I had just introduced you to Chris Jenky in Respirtory @ Swedish on my last blog entry? Found out he and his wife moved out of state where she was from. Darn, I really enjoyed his easy going manner and seemed to really know his stuff. Oh well. During this past visit, I heard about another of Dr. Yakes patients - a girl that has a large avm on her arm. Apparently so large, that she has to hold her arm over her head - I guess the blood flow would be too great if she held her arm down in a relaxed position. Can't imagine how difficult this would be for a child to go through, as it is hard enough for me as an adult! Dr. Yakes always tells me, "We're winning", and I want to say, "Ok, but WHEN"?

The day I was to be released from Swedish, I woke up to the news about the massacre in Aurora. That is the first community you see when you leave the CO Airport and Englewood is very close by where I was. I was glad to be leaving the area, but saddened to hear so much about the shooting on television once we were home.

Couldn't get through this horrible time of my life without my amazing husband Mark. Not only does he take care of my medical needs - he administers my IV Antibiotics twice a day - cooks all our meals and puts up with my weird cravings depending on my meds! If I'm on steroids, I am ravenous. There are times I'm on a particular antibiotic and I have no appetite at all - I can go all day w/only eating a baked potato or a bowl of broccoli and cheese. One of my favorite new things to eat all the time is sweet potato fries! This entire experience is extremely stressful for us as a married couple, and we tell newlyweds - when we said in sickness an in health, we had no idea what we were up against. Well, we had some idea, Mark had already nursed me through the doctors breaking my jaw bone to see if the avm was going that deep, resulting in having my mouth wired shut for 6 weeks. At that time though, I had not been able to find a doctor that really knew how to help me and we certainly didn't know how extensive the treatments would be! Some spouses leave the marriage - we have a running joke where Mark tells me, "You know I'm leaving you when this is all over". My response is, "Ok, let me tell Steve Perry from JOURNEY to wait for me"! :) Whenever Mark has come to the office to rescue me after a bleed, my female co-workers are always telling me, "Wow, he's so nice and so tall"! Mark just changed my trache out this morning - I could not survive this "curse" as my local doctor called it, without Mark - he is a saint to put up with me! Mark feeds, bathes and grooms Hanz and Bella - so all I have to do is love them! They are such great therapy for me - helps keep my mind off what I'm going through!

Our families continue to offer so much support! Especially my sister Celia and her husband Greg. My brother-in-law Jim and his wife Shelley that live in Rockport. We could not function with what we are going through without their help! Mom jumps in when she can to take me on a doctor appt. if I'm not feeling well, or taking us out for dinner to give Mark a break from the kitchen! When I stayed home Friday, Celia drove me to the doctor, to the pharmacy, to go get my phone battery that I forgot @ work, to Nurses on Wheels to get my needle changed and my IV dose - then Mom took over to keep me company in case I had a bleed until Mark got home from work. To all my BFF's - Dorinda, Felice, Patty, Sylvia and Jackie - thanks for understanding I can't always get things out in the mail on time (or at all) or go out for lunch & have fun. I know my in-laws have me on the prayer list at their church - I appreciate and really need all the prayers I know come my way from all of you! Thanks again for keeping in touch with me. I appreciate it more than you know!

Hugs!

Cyndi

I'm including some fun photos. The cute dog with the updo I saw on Facebook - I think it's someones Brussels. Someone had written a comment saying, "has she seen herself in the mirror"? The vampire cartoon is so cute - it is on the bulletin board in my brother-in-laws office - he's a dentist! Oh, I almost forgot, Celia likes to frequent a restaurant conventiently located across the street from Swedish called The Copper Pot, and this was the first time I got to go with her! The food is awesome - like home made!