Happy New Year!

Happy New Year! Hoping everyone is having a fun, safe New Years Eve! Today is my wonderful husbands birthday and we've been celebrating all day! First thing this morning, Mom and Vicente took us to breakfast @ IHOP! Went to hang out @ Moms for a bit afterwards and played "Spicey Farkle" that Dorinda gave us for Christmas and Mom and Vicente loved it! Mom won the first game and I won the second! Then my brother-in-law Greg and nephew Davis took us to dinner @ Red Lobster! It was great seeing them, as they just got back from visiting Greg's younger brother Terry, his new wife Michelle and her 3 boys in WA, State!

Santa brought us a wonderful gift this year - a little sister for Hanz! We had been thinking about it for a while and weighing the pros and cons on another pet ...We didn't want Hanz to be any older before getting another pup, so there wouldn't be such a big difference in their ages, so we really needed to move quickly as Hanz is already 2 years old! Actually let me go back a bit and tell you how it all started! I was on year SIX of my embolization treatments for my AVM and Mark and I were really feeling like our lives were on hold. Couldn't do much between all the treatments, trips and recovery I was going through. We had a Labrador for 8 years and had lost him to what we think were the effects of getting hit by a car. In any case, we talked about what kind of pet we wanted next, and had decided we wanted an indoor, small dog - since our last one had been a large outside dog! We had also agreed to wait until my treatments were over, otherwise it wouldn't be fair to the dog that we had to go out of town all the time. Well, we happened to have an opportunity to have the dog we always wanted after seeing the movie AS GOOD AS IT GETS that came out in 1992 I think - starring Jack Nicholson and Helen Hunt and the super cute Brussels Griffon named Verdell! We acquired a male, rough coat Brussels Griffon we named Hanz that has been such a blessing! Funny thing is, when I would go see my local ENT Dr. Zane - I found out he also has a Brussels Griffon, a female named Ellie! He loved her so much, he also got Brussels pups for his two daughters from the same litter as Ellie! Dr. Zane told me that not a day goes by that he and his wife feel that Ellie is a blessing for them! We feel the same way about Hanz! He has been such a good boy! Smart, cute and loving! It was the hardest thing ever for me to leave him when I would go to CO for a treatment... I mean I would CRY after dropping him off @ my brother-in-law Jim and his wife Shelley's before going on a medical trip! I didn't want my baby to think that Mommy abandoned him! I really think it has taken Hanz until very recently to realize that we are in fact coming back for him every time! We always felt guilty leaving him home alone while we were @ work all day. We had played around with the idea of getting another Brussels to keep Hanz company during the day! I was really bugging Mark about it, because I love Hanz so much and he makes me so happy, that I just knew it would be awesome to have another Brussels!
While I know that not every one is a "dog person" - heck we had 5 Siamese cats @ one time - but Hanz was great about helping me forget my medical woes! Do you know how horrible living with an avm on a daily basis is?! If you have kept up with my blog, then you might have an idea. It's nothing like living it though! Lately, I've been having some spontaneous bleeding - Had one @ work while I was standing @ the copy machine. Just as a co-worker walked by and told me I was bleeding, I saw a drop of blood land on the copy paper! A day or so later, I can't remember why I woke up about 4:00 a.m., but next think I knew I realized I had blood all over the front of my nightgown! I quickly took off the humidifier cap I wear on my trache and shook Mark awake to help me! I ran to the bathroom to see that I had a big blob of coagulated blood on my nightgown and the bleeding had come from the inside of my mouth and I was still bleeding! When these things happen, and by the time your bleeding finishes and you clean up the area and yourself, I didn't sleep much and went to work the next day not feeling my best! Lately seems I was getting a lot of being asked, "What happened to your face"?! Do you know how invasive that is? I just can't get over the fact, that some people ignore common sense and good manners and disregard how they may be making ME feel when they ask that! I know my brother-in-law Greg had asked my sister Celia a while back, if there was something they could do for me to make me feel better. I know he was wishing they could do more for me, as to not see me hurting and having so many avm related problems! They see me often enough to know how badly things can get dealing with this avm! Nothing would make happier than to add to our little family with a baby girl that I could dress up and put bows in her hair! I told Mark this is all I wanted for Christmas, our 18th Wedding Anniversary and my upcoming 50th Birthday in May! Every year Mom asks me, "what do you want for your birthday", and I tell her the same thing, "nothing". I feel I have everything w/my husband and Hanz! But now I had my heart set on adding to our perfect little family!
So the search started! I don't know how we got so lucky to find Hanz nearby, but it is pretty hard to find a Brussels Griffon in South Texas! I was calling Vets. in San Antonio, Houston, Kerrville and Austin to see if any might know of a breeder to refer us to! No luck going that route, darn! Yes, I tried the Internet - that was everyones suggestion, but most Brussels were located out of state - the closest being Oklahoma! I had been bugging my girlfriends that live out of town if they knew of any Brussels breeders and finally had some luck!
Found what we were looking for, a female, rough coat puppy! The one downside was having to go pick her up in Dallas! Yikes! As it is, the breeder was in Oklahoma, but had a friend willing to drive the puppy in to Dallas! Called one of my best buds Dorinda that lives in Pasadena, TX to tell her our excitement about it and right away she said, "Sounds like a road trip to me"! (You'll see a photo of Mark, Hanz and I right before we get in the car to go on our road trip!) I e-mailed another best bud that I've known for 37 years that lives in Dallas and without hesitation she invited us to stay with her on our visit! I explained that while I appreciated the hospitality, we had a friend coming with us and I didn't want to impose! Without missing a beat, Patty said, "Bring your friend too, she is welcomed to stay as well"! Do I have awesome friends or what? Let the fun begin! Well, one of the things that wasn't much fun, was deciding whether to lug my humidifier with us. I need it to moisten my trache area and if I don't have it, I get very dry and start hacking with phlegm! Gross, I know, but this is just part of the fun of my avm world! This monstrosity is heavy and sounds like an air compressor and has parts and water and a hose! Mark packed it! That is really why we really don't wander too far away from home - I have too many needs for my avm to make me comfortable and it's too much trouble to drag everything with me! I know alot of people have worse problems, but mine aren't your basic ones either! I do recognize how blessed I am that I have such an amazing support team and I have hope this will all be over one day!
So Mark and Dorinda started planning ... we would drive to Pasadena and pick up Dorinda, put all our stuff into her car and she would take over driving on to Dallas! There is just no way I could help drive with all the medication I'm on! As it is, I slept most of the way over and back! That would give Mark a break in driving, and Dorinda knew the way already, having gone to Dallas many times for her NASCAR races! Dorinda has GPS so we were set! Patty was standing outside her front lawn when we arrived and we were all happy to see each other and Patty/Dorinda were meeting for the first time! They hit it off so well! Both liked each others style and sense of humor! Patty has a very nice home in Frisco, TX and we slept in her guest room and Dorinda in a pull out sleeper in a den. Hanz was such a good boy on this trip! See photo of him on the bed @ Patty's, he slept with us as always! We wondered whether he would get along with Patty's 3 dogs, but they all got along great!
There's a funny story about what happened on the way up to Dallas - we stopped along the way @ a rest stop called Buc-ees and Mark and I had never been there, so we were anxious to see what it was all about! It was a huge convenience store/souvenir shop that had a deli and bakery inside. Huge bathrooms, coffee and sodas/juices galore and everything from candles to stuffed toys! I think Dorinda went in first and got what she wanted, while Mark walked Hanz around outside. I think I went in next, then came out to tell Mark all about what I had seen, so Dorinda offered to hold on to Hanz so both Mark and I could go in together. I didn't think much about it and took advantage of the opportunity and when we came back out, Dorinda had a story to tell us! She said my poor baby Hanz panicked when we both disappeared and she said you would have thought we dropped him off @ the pound with the way he was acting! Said Hanz was looking through the glass doors in a panic hoping to catch a glimpse of us, meanwhile people were stopping to pet and admire him. My poor baby thought Mommy and Daddy had left him! I'm so sorry Hanzie! Thank goodness we weren't in there too long!
Anyway, next morning, we were to meet up with the lady bringing the puppy in, and Patty had a prior commitment in the morning, so she didn't come with us. I have another best bud that lives in Euless, TX that we had planned to hook up with - Felice, her husband Jon and their baby daughter Emily! Dorinda and Felice know each other, but unfortunately we missed Felice's call in the morning and we didn't get a chance to meet up with her! I had already chosen the name I wanted for our little girl - Bella, after the character in the Twilight book/movie series!
We went back to Patty's house and introduced Bella to the rest of Pattys dogs and she jumped right in and played with all of them! We should have named her Dynamite, she is something else, a real live wire!
I think I'll end this here and continue this with part II - that way it won't seem like such a long entry all @ once! Talk to you soon!
Love,
Cyndi

Extra photos and comments!

Good Morning everyone! Woke up to take pain pills and steroid and now I'm going to do what I tried to do last night before sleep necessity took over! I already wrote all the basic things that happened, and overlooked talking about one of the main people that is with me on this journey!

Mark is outstanding as a husband, friend, home health tech.! He totally understands me and what he needs to do to make these trips as comfortable as possible for me! We have been through this routine so many times, and with Mark @ the helm, I'm just following his direction! Mark always has my ticket/ID/Purse or whatever he needs to do that will make things easier for me!

Here are some extra photos from the trip - I just noticed that I had not posted any photos of Dr. Hepworth while we were in his office! Dr. Hepworth is the best! The one photo where I'm holding something black like sunglasses are for me to wear while Dr. Hepworth is looking in my right ear and up my nostrills! Yikes! I get to "see" through these glasses @ everything Dr. Hepworth is doing to me - weird!

Here is a photo Mark took of me @ the hotel - I am so tired I fell asleep sitting up and I wasn't feeling well w/an upset stomach!

Here I am on the way to surgery - Saba has been a part of my trips since I got her! We really had a good trip - just enough time to do what we needed to. Actually could have used another couple hours to shop maybe - but like I said, Mark humors me and tries to make this as pleasant as possible for me! Take care y'all! Thanks again!

Cyndi Schuman

Dec. 1, 2010 - 34th embolization

Hi everyone! It's been so long since I've blogged, I hope I remember how to do everything! Our trip started on Tues., Nov. 30th - soon as we arrived in Houston, we made a beeline for Starbucks! Felice and Jon kindly had given us a Starbucks gift card, so we put that to good use! Thanks Felice! Arrived in CO mid-morning Tuesday, and headed to the car rental. Mark had suggested we go to Teds Montana Grill for lunch and see our friend, waitress Michelle! I wasn't in the mood for a burger, so we decided to go to the Cheescake Factory and have lunch before my 2pm appt. w/Dr. Hepworth! Wasn't sure what to order since we've had a lot of turkey and chicken lately, so @ the last minute I saw some fried macaronni as an appetizer and went for that w/some passion tea! Mark had some avocado egg roll looking like things and passion tea as well. After we were done eating, we had a little time to run up to the pet store on the second floor of the Park Meadows Mall! See photos of puppies!
Headed over to Dr. Hepworths Office, where he checked my air passages and trache to make sure everything is in working order. Dr. Hepworth has a very good bedside manner and is very happy with my progress! He is hoping that in March, if Dr. Yakes said it's ok, then we'll do another debulking then! Mark asked Dr. Hepworth about whether I would eventually have my hearing back in my left ear, and Dr. Hepworth was pretty confident I would! Right now the avm is pushing against something that is making me deaf on my left side - very frustrating! All I can hear is a constant pulse! Dr. Hepworth went on to say that it may not look like a lot of changes are taking place on the outside right now, but is definitely noticeably better on the "inside"!
Went back to Park Meadows Mall to look around some more and had to go into St. Nick's, the Christmas Store! Here I am in front of the Snow Babies display. One of my best friends, Dorinda, has a sizeable collection of these in her home displayed in a curio! We always enjoy stopping in @ Borders Bookstore, so we did that, before heading to the hotel to check in! Actually, we went to Whole Foods to pick up something for dinner. We got some pulled pork sandwiches that are really good, along with some sides, like spiral pasta salad. Again, I gave Mark a gift card that Felice, Jon and Emily sent us to Whole Foods and Mark was so busy talking to the cashier, he paid for our dinner in cash! Hijole! So now we head to the hotel to check in and start having our dinner. Meanwhile, I had been feeling a little nauseous so I barely touched my dinner! I kept thinking back to what I had eaten earlier in the day and all I can think of that might have done me wrong is the fried macaronni appetizer? Mark kept telling me to lay down, but I was afraid I wouldn't get up in time to run to the bathroom if I felt that coming back! Yuck! So, I had a miserable night before my procedure!
Showed up right @ 9:00 a.m. for pre-registration and got started with all my activities! I think the name of the nurse doing my IV was Angela and she got it done the first time! Usually I'm making sure I have a book to read while I wait, or trying to get comfortable, but I still wasn't completely over the nausea, so I didn't do much of anything but lay there. Dr. Yakes P.A., Kelly came by - lovely in her pregnancy! She is due in early Feb. I believe! We had asked Kelly to find out what # embolization this was for me - and it's actually #34! We'e made 41 trips to Denver - but there were times I was there for another reason, like removing coils and not necessrily getting an embolization. Anyway, next thing I knew, Quinn the anesthesiologist came by to ask a few questions and then it was time to go! Mark always walks along next to my bed as we head to the surgical room. Of course I had to hop off the bed to go to the bathroom one more time, so got that taken care of! The surgical nurses are super nice and like to get in on photos and asked whether we had seen Dr. Yakes yet - since we hadn't, Dr. Yakes came over for hugs and to hear if we had any concerns or questions. He's looking awesome and skinny! I was telling him how happy I was that Shalon is looking so good, and he said that would be me pretty soon! Dr. Yakes felt that we made it a turning point during my last embolization and is very pleased with my progress! He made it sound like it's all downhill from now on! Yay! I sure hope so!
Didn't seem like I spent much time in recovery, even though Dr. Yakes told Mark he injected 27 cc's of alcohol this time! I was put in a holding room until my room was ready, and Dr. Yakes other P.A., Mandi, stopped by to "discharge" me as a patient. They'll do this the night before, so we won't have to wait for them in the morning to do their rounds and can leave as early as we want to catch our flight!
My sister Celia made me a cute, colorful hospital gown, along with matching pillowcase - I changed in to that after taking a much needed shower! I had some blood in my hair, although Kelley said I hardly lost any blood when Dr. Yakes was injecting alcohol - Dr. Yakes was very pleased about that!
Mark stayed with me until 10pm and he headed back to the room. Next morning as always, he brings me a white choc. mocha from Starbucks! Plus, a sticky bun to go with it - yum! One of the times Mark went down the hall, he ran into Don, one of my favorite nurses from my very first embolization @ Swedish that we nicknamed "The Dream Team"! I hadn't seen Don in a long time, so was very happy to see him! My current nurse of the day was Evan, and Evan told me later that Don is the one who orientated him - so I told him Don always did an awesome job! Love nurses that anticipate what you need before you even call them - Don is one of those!
Got dressed shortly after Don left and we started heading out to drop off prescriptions and get our things repacked @ our hotel! Oh! almost forgot! Dropped in on Dr. Yakes patient coordinator Sadie to set up my follow up appt.!
So that's pretty much our trip this time 'round! I may tweek this here and there, but I think this covers it! Thanks to everyone for their prayer and support! We arrived in CC about 8pm and headed out to Rockport to pick up our Hanzie from Uncle Jim and Aunt Shelleys house! They take such wonderful care of Hanz! Shelley said Hanz seemed a bit bummed after Mark dropped him off Monday afternoon. Luckily from what I hear, Hanz's buddy Bessie cheered him up right away when they started playing together outside! Shelley even bathes Hanz before she returns him to us, all clean and blow dryed! Leaving Hanz is one of the hardest things about my trips - the only way they are bearable for me is knowing what good hands Hanz is in! Jim and Shelley take great care of their 4 dogs and I know they both like Hanz a lot and he adores them! Many thanks!

Cyndi Schuman

Predictable Photo

Hi Everyone!!

How are you? I'm doing pretty good - it's the steroids talking! I'm on the second round after the past embolization. Today will be my last day to take 2 Prednisone and then the next 2 weeks I'll just take one Prednisone a day! Here's hoping that keeps the pain away!

I wanted to share this photo with you that Mark took - he thought it was pretty funny, and it is! My pain meds (Oxycontin and Neurontin) make me soooo drowsy, that I can't wait 'till I get home from work to change into my jammies and just relax, read and give in to the drowsiness! Our bed is so comfortable too, as Hanz can attest to!

So glad it's the weekend! Unfortunately, Mark has to work tomorrow with the City, so we'll be waking up early! I haven't decided yet whether to head over to the American Bank Plaza on Sunday to go see Bruce Jenner @ the Best of the Best goings on! Y'all have a great weekend!

Love,

Cyndi

Ok, I'll add a couple more photos! Here I am w/my Aunt Elsa - visiting from Bellview, WA - and my baby Hanz! Also, my Aunt Josie that just turned 70, my Aunt Elsa and my Mom!

Huge Breakthrough!!!

Hi Everyone!

How are you? I'm doing great! That's the steroids talking, ha, ha, ha! Sunday will be a sad day and my first whole day w/out a steroid! Yikes! That is when the pain will set in - usually! Last embolization I had to go through FOUR rounds of steroids before I finally felt well enough w/out having to take them!

Ok, so the BIG news of the day is .... FINALLY, FINALLY there is proof to the doubters that all the horridness of what I've been through will come to an end and it will really, really all be over - for REAL! What am I talking about? Some of you already know! Last week, my buddy Shalon, another avm-er, was going in for her first debulkment! I already went through my first one, but Shalons was such a dramatic change! She really questioned the doctors about every single step they would be taking during the debulkment and she had the nurses taking photos during the procedure! Wow! You can see these photos in a slide show on Shalon's website! You can get to her site from mine! Please do take the time to look for them - it will help everyone understand what we go through and that all that we HAVE gone through is not in vain! I won't mention any names, but I had someone actually ask me whether I felt I was being used as a guinea pig by these doctors, because apparently this person wasn't seeing any improvement on me fast enough to satisfy them. I'm sure people don't want to see anyone suffer and maybe this person had my best interest - but this is a slow process and incredibly difficult to understand!

I just wanted the opportunity to show eveyrone that keeps in touch with me a photo of "original Shalon" and the fantastic way she looks after her first debulkment! This is because she is still swollen from that procedure but you can tell what a wonderful difference it makes! Yay Shalon! You have been incredibly encouraging to me and so many other avm-ers! You do so much for so many and we appreciate it!

I can't wait for it to be my turn! About two embolizations ago, Dr. Hepworth said that maybe in 6-8 more, that he wanted to do another debulking on me! Ugh, those are tough - well, it all is! This last trip was just rough all around!

So much to think about still - everything we went through. I'm shooting for heading back to CO the week after Thanksgiving. We'll see. I have to start working w/my Therabite again - haven't made time for that lately.

Just wanted to take some time to show everyone what an incredible breakthrough has been made in my avm world to my friend Shalon! It's been and still is a very rough road, but to finally SEE first hand that this WORKS!!!! All your prayer gives me the strength to get through - it really does! Many people @ the courthouse where I work will tell me how incredible I am to keep working, or whatever - but I always give credit to Our Lord of course ... our faith and all the prayer warriors I have!

Oh! Yes, back to Shalon - go to her website or blog (see the link on my site to hers) and read over a bit and you will see one area that says something like "Grody pictures", so click on that! It starts w/a photo of cupcakes, but keep watching! Viewer discretion is advised for the weak stomached! Thank you Shalon for putting those photos out there! We all need to see what happens when we are under!

Thanks again everyone! Love you all! Maybe our journey will reach it's end soon!
Hugs!
Cyndi

Prince Hanz turns 2 on 9/20/10!

Hi again!

Had to post a couple of photos we took earlier today! It was Hanz's birthday on the 20th, but w/everything we had going on there wasn't time for a party like last year! We brought him a stuffed animal from the Denver airport! He loves getting a new stuffed toy! We're so happy to be home with our baby!

Cyndi

Colorado 40?

Hi everyone! How are things in your world these days? I'm ready to blog all about our adventures during our trip to CO! First let me share a photo of Shalon with you post debulkment! Even with the swelling you can see what a difference having that debulkment made! How exciting! That will be ME someday too!

Soon as we landed, picked up car rental and headed out to have lunch! We decided to go see our buddy Michelle, a waitress we have befriended @ Ted's Montana Grill"! See photos of Michelle and I! Headed out to look for a couple of books I had been wanting, so we went to Barnes and Noble and I was also hoping Petsmart had any Brussels Griffon books, but no luck! Finally found the paperback book I was wanting @ Borders the latest by author P.J. Parrish called The Little Death @ Park Meadows Mall! At one point, we sat down @ Borders and were looking through some magazines - once we got up to leave, this young lady followed us and had to tell me she would be praying for me! Mark tells her we need all the prayer we can get! So we all held hands and prayed - she wanted us to go to her church, but told her we were in town only a few days.

After going to Safeway to purchase my favorite Spray Starch and snacks, we finally headed to the hotel to check in!
Mark went out to get us pizza @ one of his fav. places in Englewood called Ricos! Had that for dinner and watched TV before bed. I did not sleep well - partially because I couldn't stack my pillows just right, so I woke up w/a backache! I'm not sure if not being able to almost sit up to sleep like I do @ home, caused me anxiety about not having my humidifier cup attached to my trache! Much as I hate that thing, I need it and felt like I couldn't catch my breath! So that reminded me that Dr. Yakes had told me that some of his patients come to find they didn't want to get rid of the trache later when all the embolizations were done! When Dr.Yakes told me this, I thought, "Yeah right, who wouldn't want to get rid of the stupid trache ASAP! I'm worried now that when it comes time to get rid of the trache, am I going to have an anxiety attack because that airway is closed now? I shouldn't because I only need the trache for embolizations, I don't need it on a daily basis to breathe!

On to the next morning - got up and reported to Swedish, and who do we see coming down the hall? Dr. Yakes! He has lost an incredible about of weight! I'll show you a before and after photo! In one photo you'll see Dr. Yakes, Dr. Hepworth and myself in the middle! Now check out Mr. Skinny! Right after Mark took our picture, he shook hands w/Dr. Yakes, as did I and leaned in for a kiss on the cheek! Well apparently when I "pucker" my mouth starts to bleed on the inside! Didn't realize it until Dr. Yakes was down the hall and I pointed to my mouth, looked @ Mark and said "bleeding"! He ran to find the restroom so I could spit out into the sink! There was a guy in there trying to change a baby's diaper and Mark told him to please hurry, as we had an emergency situation! Got it under control quickly enough, but I wanted to make sure and let the doc know before I was put under!

This was not a good day in Ambulatory Care - from what we heard later in OR, the nurses in Ambulatory were having a hard time getting IV's started - mine being one of them! Here I am w/Saba of course! Lots of people @ Swedish ask about her - the recptionist that pre-registered me did! We heard Nurse Mary had quit - we used to call her Boston because she had a heavy accent! She used to get my IV's started. Nurse Jean started my IV twice w/no luck (short blondish hair), so Nurse Mae (hair back in ponytail)took over! She put it where my right wrist bends - OUCH! Also of course, Dr. Yakes Phys. Asst., Kelly stopped by before my procedure - check out photos!

Then Dr. Quinn, the anesthesiologist came by to see if I was ready for the embolization! Last treatment I had, Dr. Quinn had come by to see me and I was so sleepy and groggy, that I didn't remember her talking to me. When I was taken in to OR, I asked Dr. Quinn why she didn't come by, but she said she knew I wouldn't remember since I had been so sleepy! Any way, once the anesthesiologist comes by, you know it's almost time to be transported to OR! Sure enough, here we go! Here I am in OR with Saba - I had asked to have a mist cup put on my trache, since I didn't have that @ the hotel the night before. If I don't have the mist cup for a while, I end up waking up from the anesthesia w/phlegm and yucky, scratchy throat! Course before the nurses put me under, I must run to the bathroom once more! Also we mentioned to Dr. Quinn that I had a minor bleed in my mouth earlier and Dr. Yakes came over to talk to me about this as well! I was telling Dr. Yakes that as I kissed him on the cheek, I started bleeding from inside my mouth. He replies with, "Yeah, I seem to have that affect on women"! I asked him to please not work in my mouth because I haven't worked w/the therabite lately due to so much swelling and pain from the procedure before! Next thing I remember is opening my eyes and I could see Dr. Quinn and an OR nurse and someone else all standing over me trying to do something! I think I had a bleed right after the embolization, so I'm sure the Dr. and nurses were trying to suction out the blood so I wouldn't choke! I didn't want to think about what was going on, instead, feeling like I stepped away from what was happenning, I started praying Hail Mary's and Our Fathers to stay calm and not get anxious! I later woke up in post op and tried to lay on my side since my back hurt so much from laying flat on the bed - as I usually sleep with pillows under my knees for back support! I did not want ice chips, I just wanted something for the pain and to rest! The nurses told me they called Mark and he would be over from the hotel in a bit! Dr. Yakes had done a groin stick, so I had to keep my leg straight for a long time! Next thing I know, it was time to take me to a room!! Last couple of times I've been @ Swedish I haven't had a private room w/a shower - I had to stay like in CCU area or something of that sort! Mark showed up pretty soon after I got put in a room. I usually try to hoist myself over to the bed from the bed I was on in OR - but not this time! Dr. Yakes hit me with 30cc's of alcohol and I think the most he had ever used before was maybe 24 or 26. I still had an hour before I could get up or bend my leg, so I just closed my eyes and rested. Still didn't even want ice chips or anything! Many times I wake up and am raring to go, asking for food since I have to fast! Not this time - the whole procedure took it out of me! I had also asked the OR nurse to please change my IV from my right wrist to my left while I was under so it wouldn't hurt! Well, she did, but I didn't realize until later that they still kept in the one that was hurting on my right wrist!

One of my favorite nurses stopped by later to say hello! Dave LaBadie was one of the original "dream team" I had for my first embolization ever w/Dr. Yakes! Dave had a new nurse with him named Jason, so here I am w/both of them!

The next morning, Dr. Yakes new P.A., Mandy came by to give me my discharge papers and prescriptions! Mark had showed up earlier and brought me a White Chocolate Mocha from Starbucks and some "sticky buns" from Safeway! Sadly we forgot to bring it w/me since I didn't finish the roll! Darn! We dropped off and waited for my meds @ Wallgreens and then headed to the hotel to repack everything! Had to head toward Enterprise to return the car rental after Mark topped it off w/gas! Got on the plane @ the airport and headed for home! Got in 'bout 10 p.m. and we headed out to Rockport the next morning to pick up our little Hanz! Jim took all of us out for breakfast, along with their friends Linda and Buddy! Hanz adores Linda - he almost jumps out our car window to get to her when we arrive @ their place!

Jim told us Hanz had been chasing their cows along side the fence! I'm the one that is sad to leave Hanz behind, but Shelley told me Hanz loved running through the backyard through the wet grass due to the recent rains! She was nice enough to bathe Hanz before we arrived - he must have been slobbered and slimed by his girlfriend Bessie, one of Jim and Shelley's outside dogs! I'm sure Hanz was just muddy from running around outside - Mark and I lovingly refer to Jim and Shelley's as Chuck E Cheese for dogs, because Hanz is happy to have other dogs to play with and get all that energy out!

Well, I may add a little here or there, but this was pretty much our trip this time! The weather was great - maybe just needing a light jacket for evening! I'm guessing my next trip will be late November! Take Care y'all! Thanks for all your love, prayers and support! I must tell you though, how amazing Mark is during these trips! He is sooo patient and comforting to me - he is exactly what I need to get through these tough times! I know that no matter what I have to go through or what I will look like in the end, Mark will always be by my side, loving me and supporting me all the way! We both dream of the day this is all behind us and we can continue to move forward in a more "normal" manner, along with our furry child, Hanz! Hanz has such an amazing personality and energy that he is a wonderful distraction for me from all this avm poop! We always like to say that Hanz rescued us - he's one special little dog! I'll be in touch!

Cyndi

Oh! You must check in to see Shalon's website! You can get to her site from mine and click on the one that says Shalon's website, because she also has a blog! Well, scroll down half way down the page on the right side of the screen until you see where she wrote Grody pictures! The first photo is of some cupcakes, but just keep watching the slide show to see photos of Shalon's debulking! I can't imagine how Dr. Hepworth and Dr. Campana could tell what was avm or whatever else was going on in there! To our eyes, it looks like red blobs with wires that were removed from Shalon's face and she already looks fabulous! She was put back togther and had a drain pump for excess fluids that Dr. Hepworth removed a few days later! Can't wait to see how well she looks once her swelling goes down! That will be me some day! I'm very excited for Shalon - she is awesome!

My Avm Buddy, Shalon!

Hi Family and Friends!

I really, really want to share this with you - I know everyone's time is limited (mine sure is!) but I think all of you can get so much out of this entry in Shalons website! So, that you won't have to go hunt it down, I have brought it to you! Please keep her in your prayers as well - she is going through a lot and has been so inspirational to me! She's always happy to see me and very encouraging to all AVM patients! Like me, she has an amazing husband named Josh that reminds me a lot of Mark! The "warthog" is what she named this area on her face that developed from the embolizations that is dark and scabby I believe! You can always keep up w/Shalon by clicking on to her blog from my main page! She is a doll!



Surgery is scheduled to remove the coils. August 18th I go back in for an embolization with Yakes. And then on the 19th I have surgery with Dr. Hepworth, Dr. Campagna, and Dr. Cote to remove all of my inner bling. Those platinum coils that are now what you see as the “bulk,” what has caused the warthog, and which are trying to escape on their own are coming out. I still really am going to tell them I want the platinum to melt down into a keepsake bracelet. For reals! I’m thinking I’ll have a little charm made of a warthog to remember him by.

I’m super scared, absolutely nervous, but very hopeful. Trying with everything I have to focus on that last part. But it’s hard. We’ve all prepared the best we can and I know the docs are capable, cautious, and without any Superman complex. I feel good about that. But they couldn’t get any of the images they wanted to be able to prepare. They can’t “see” anything in an MRI or any other films because the coils ruin the image. So they are going in somewhat blind. But it’s necessary and they have prepared the best they can. They are confident in what they can do while absolutely aware of what they don’t want to do or don’t want to get involved with. And that’s the best we can go with.

That's the scoop! Phase 1.5 is under way. This surgery isn’t meant to be reconstructive or leave me as the Super Model that I’m anticipating ;) It is just to get the junk out and to let Dr. Yakes continue with the embolizations until he feels that he has gotten everything. When he says we are done, then I’ll go back with Hep & Cote to work on more debulking and ultimately the aesthetic part of this entire journey.

Wish me luck for next month and keep your fingers crossed that my new docs prove to be just as very awesome as I think they are!

Shalon

OMG!

Hi Everyone! Wow, its finally the weekend and already I've had all sorts of adventures! Would you believe that I was @ the end of this blog and I totally wiped it out by accident? Yup! So here goes again!

First I have to say that I'm calling this O-M-G in honor of one of my fun, animal loving co-workers named Mary Jo! She's always saying OMG! The way she says it makes it funny for me every time! Her daughter has a poodle named Sammie that Mary Jo gets to take care of now and then, so she and I trade Sammie and Hanz stories and share pictures on our phones!

On Friday, Mark and I were leaving for work and gave each other a kiss goodbye, when I felt my mouth filling up with blood! It was really comming out, because I felt I had to open my mouth and just let it fall out! Told Mark to open the front door again so I could rinse my mouth out in the bathroom! Would you believe after all that, I still made it to work on time?! Then, during my time to cover the front desk for lunch, I started having another bleed! We aren't supposed to leave the front area unattended, but I knew I needed to get to the bathroom fast! I ran to my friend Diana's office first - I pointed to my mouth and opened it slightly and she goes, "OK"! She knew what was happening and by the time I got back, she already had gotten someone to cover the front desk for me! Not really happy about these things going on @ work! Now I take my toothbrush/paste to work every day in case this happens, so I won't have blood on my breath - ugh! Actually, I had been having these bleeds even before going to CO this past time and I was hoping that w/Dr. Yakes doing an embolization, that would put an end to these bleeds! Meanwhile, I have run out of the second round of steroids my Primary Care Physician put me on and I had been feeling more pain as well! Dr. Yakes always sends me home on Prednisone 20 mg., but Dr. Boynton put me on Medrol 4mg. I didn't like the latter because they gave me night sweats bad!

So, after a long day, I get home and Mark decides to make nachos for dinner! Of course those must be chased by a MARK-a-rita! I usually have a couple of dollops of the frozen concoction, but this night, I decided to have a little extra figuring, what the heck! Well, I woke up sweating and nauseous @ 5:00 a.m.! I knew I was going to need to be close to the bathroom and sure enough - had to see those nachos again! Then I caught sight of myself in the mirror and I looked horrible! I was all swollen again! My eye was almost swollen shut and the left side of my lip/face was very swollen too! It took me a while to figure out what happened! Good thing I write all my medication down! I had been off steroids completely for 2 days, so my pain was getting greater! At this point I didn't think either doctor would give me another round of steroids, so I thought I could man up and deal with it! Course my way of "dealing with it" meant taking too many pain pills!! Mmmm.....Hmmm....

I had been reading the part in Breaking Dawn where Bella is nauseous and I didn't even want to read about that! After sleeping on and off most of the today, I called up to CO and got the Physician Asst.on call, Kelly and she called me back right away! She called another round of Prednisone 20mg so I can get back on track! All I've eaten all day is a cup of applesauce! I attempted one of my favorite snacks, a glass of milk and some bread w/blackberry preserves on it! Kept that down, so I guess I'll live! Took a shower so I feel better.

Earlier on Friday, I noticed that I took my main pain killer,

the Oxycontin 40 mg @ 6:30 a.m.

the Gabapentin 300 mg. @ 8:30 a.m (this is safe-@the hospital they give me
both of these together!)

Here comes the mistake: taking the Lortab7.5-500 mg @ 9:30 a.m.!!!

So she decides to repeat the mistake she hasn't realized yet that she's made later on in the day by taking:

Oxy @3pm
Gaba @ 4:30pm
Lortab @ 7pm!

Yeah, my body is going, "I don't think you should have so many narcotics in your system little girl"! Course the Gabapentin isn't a narcotic, but I was taking the other two, too close together in time! UGH!

I should have realized this on Thursday - I had lunch w/my co-worker/friend Diana and my husband Mark. We were all talking and eating and then Mark reached out to grab my hand. My first thought was, "oh, he's being romantic and wants to hold my hand". The reality of it was, I hadn't realized that my hand was shaking! Enough so that Mark held it to stop it from shaking - yikes! That should have been my first clue to check out my meds I guess!

My buddy Felice called earlier this evening - she is such a great friend! She knew I had read Kenneth Folletts The Pillars of the Earth that is curently showing on Starz. She was watching it and says it is awesome! She is trying to tape it for me and then send it in the mail because she knows I don't have Starz! When I get done with this horrible AVM, I'm going to try and be a super good friend just like my buddies have been to me! Between Dorinda, Felice, Patty and Sylvia, I'm blessed to have fun, prayer and love all rolled into one!

I'd better go, I'm in pain and falling asleep! Take care!

Love,


Cyndi

I'll post a couple photos later!

Skunk!

Happy Friday everyone! TGIF! I was remembering when Davis was little (about 4 years old), he used to think that saying "Skunk"! was like saying a "bad word"! Well, that's what I feel like saying today after having some bleeds - SKUNK! Sigh ...

Today is also my first day without any steroids since my emboloization in Denver! I'm not a happy camper right now! Not that I ever would be a happy camper - camping and I don't get along! No steroids to keep the swelling down means more pain! Yeah, the whole left side of my head hurts! Soon as I finish this, I'm going to bed for a much needed NAP!! Actually, a lot of the swelling inside my mouth has gone down, so it's a little easier to brush! Did you know that I have to use a child size toothbrush so that it will fit into my mouth? Mmmm hmmm.... I prefer Cinderella, but I'll take Snow white if I have to, ha,ha! Yeah, what with my avm and all, my mouth has been "frozen" I guess is one way of putting it, so I'm only able to open my mouth a bit - enough to eat and brush! I need to work with the Therabite again, I haven't done that in a while, due to swelling and pain! I'm gonna wrap this up since I'm falling asleep @ the computer! Y'all have an aweswome weekend!

Love,

Cyndi

Set back

Hi Everyone! How are you? Is it hot out there or what? Sometimes I wonder whether it's even worth leaving the building for lunch - you can work up a sweat just walking from the office to your car! And that's because I finally got a handicapp thingy to hang off rear view mirror! Yeah, Celia had been after me to ask my doctor for one - I haul a cart full of medical supplies and all my needs every day to and from the office, and I do have some back/knee problems, so that really does come in handy!

Anyway, I was going to write how lately, I've been having bleeds from inside my mouth! I started having them a couple of weeks before I went back to CO and had hoped that after the embolization Dr. Yakes did, that I wouldn't bleed anymore from inside my mouth! Wrong! Yesterday I was in the bathroom about to wash my face, when I decided to bend down to pick up Hanz. Right then I could tell my mouth started filling up with blood! Gosh darn it! It lasted about 5 minutes and I believe it happened again in the evening for just a bit.

Well, this morning, I sat up in bed and said, "Good morning Hanz", and right then blood just came out of my mouth and on to the top sheet! Course I went to the bathroom sink and Mark took the top sheet off the bed and put it in the wash! So that is how I started my day! Luckily, these bleeds don't last long, but I DO Ok, I need to hit the sack! More later!

Cyndi

Hanz's Play Date!

Hi Family and Friends! How is everyone? I'm hungry, but what else is new? That's one of the drawbacks of being on steroids - always being hungry!

Oh well, this portion of my blog is about my little Hanzie! We had found out through the folks @ Petsmart that Linda, the office manager @ Santa Fe Animal Hospital has 2 Brussels Griffon puppies! I had called over there yesterday and spoke to one of the other receptionists that had answered the phone and asked whether we could bring Hanz by some time to meet the Brussels! Turns out the pups are a male and female named Griffin and Bristol! There aren't too many Brussels in Corpus Christi, so we all like knowing each other since we love the breed so much! This lady also knew Dr. Zane (my ENT here locally) has several Brussels in his family! Dr. Zane and his wife own Ellie, and I believe from the same litter, the Zanes got one of their daughters another Brussels that she named Missy and yet another female from the same litter for another daughter, but I forget the puppy's name! I guess the Zanes take their dogs to this clinic for their Veterinary care, and we already knew they take their dogs to The Dog House for grooming and supplies!

Anyway, we walk in with Hanz and right away everyone just oohed and ahhed over how handsome he is! You could hear comments like, "Oh how adorable"! "Look @ that profile"! (see photo of Hanz surrounded by women). Yesterday was Bristol's birthday and she turned one year old! See photo of Mark with Bristol! They were all just delighted @ how cute and friendly Hanz is! See photo of Bristol by herself and then Bristol and Griffin together! Bristol has a soft demeanor and she's actually somewhat of a heavy weight! I asked to hold her and she surprised me with how much she weighed - all 14 pounds of solid weight! Hanz is about 12 pounds and is light on his feet!

Here is a photo of Mark with Griffin and then a photo of me with Bristol! We had a nice time visiting and comparing stories and photos from our camera and Linda's phone! She got her pups from a breeder in San Antonio!

We had to laugh @ one point, because Linda was telling us how she doesn't cut the pups hair and that they don't like to be brushed! Oh, I was telling her how Hanz practically points to where he wants me to brush him next! Hanz likes the wire comb for getting those little tangles out! Anyway, I like to carry a "diaper bag" of sorts for Hanz when we take him out, just in case he needs anything - he's high maintenance like his mommy! Well, I was showing how I had some of Hanz's necessities in my bag, and right away, Griffin stuck his head in there like, "hmmmm...., I'm smelling something pretty good in there"! I had a couple of baggies with some of Hanz's favorite treats, along w/some bottled water, some wipes, some poop bags and his brush!

I almost forgot! There was a "little mishap" when we first arrived with Hanz. Mark had just asked whether Griffin had been fixed and right then Griffin decided to growl and snap a bit @ Hanz! Griffin's owner said it was because Griffin was jealous that Hanz wasn't fixed - yikes! They were all fine after that - no problems!

Griffin tended to be a little more timid overall, and has a bit of a "sad" expression. One of the receptionists teases him by saying, "this IS my happy face"! Awwww....! Linda and I both had to admit though, that right after seeing the movie "As Good As It Gets" we fell in love with Verdell, the Brussles Griffon in the movie! Right away seems both of us started looking into owning one of these dogs of our very own! Hanz has been all about love and happiness for us!

You should see Hanz - he knows we're talking about how special he is and he is just loving it! We just adore him and he knows it! Here he is, making sure we blog all about his play date! Well, Goodnight all! Gotta go iron, get my eardrops and then settle in to read Breaking Dawn for the 9th time!

Cyndi