Class Act(s)

Hi Everyone! Happy Easter! The Lord Has Risen! And our former choir co-director (Now Father Greg Labus) would say the correct response was "He has risen indeed"! And now retired Bishop Carmody would add, "and He has shown Himself to Peter"! Well, it's not quite Easter yet, but almost! I hope all of you out there have special plans for the weekend whatever makes you happy! Whether it be attending Easter Services, Mass or spending quality time with your family, friends or just catching up with whatever you want to do!
I've been wanting to blog again, but as usual, I've always got my hands full with something going on! I'll get to that later, but first I want to blog about what I wanted to start with! Got a call @ work the other day on my cell phone - and wouldn't you know, it was the ONE time I didn't have my charger with me, (as I had left it in the suitcase from the last Denver trip) so when I found out it was Kelly, Dr. Yakes P.A., I quickly told her my phone was about to die! She said she had Dr. Yakes there with her and he wanted to talk to me! Dr. Yakes wanted to apologize for having to use so much alcohol durig the embolization, but he was trying to prepare me for the surgery that was to follow in the next couple of months, where Dr. Hepworth would be doing the "debulking" under my chin! Dr. Yakes was trying to close off as many arteries as possible so there would be minimal bleeding when Dr. Hepworth went in there later! I always ask Dr. Yakes not to "hit me so hard with the alcohol" because then the alcohol sometimes traces out and then "burns" my skin, causing scabing and longer recovery time! I like to say something like, no more than 20 or so (is it millimeters?) of alcohol. Come to find, Dr. Yakes used like 38! YIKES! WHY? Later, Kelly, P.A., explained that about 1/2 of that was contrast dye, so that Dr. Yakes could see exactly where that alcohol was going to make sure he was getting what he needed ready for Dr. Hepworth later! Whew! That was a relief to hear that! As you know from my former blog entry - that swelling after this past embolization went inward (that's why I didn't look so bad in that one photo of me while I was in Recovery from one of my last blog entries). Dr. Yakes just wanted to tell me how bad he felt about what I went through with all that swelling! I told Dr. Yakes that the human spirit's desire to live and survive is incredible! I just felt bad for my sister Celia having to watch me suffer so much and having to stay in the hospital like five days, instead of the usual overnight stay! Of course during our conversation, my phone dies! Oh no! I immediately called Mark on a land line to his cell phone. Gave him Dr. Yakes office number and had Mark call and tell Dr. Yakes what happened! Mark got a hold of Dr. Yakes, but he told Mark he was pretty much done with what he wanted to tell me @ that point anyway, so no problem! I just thought it was pretty neat that Dr. Yakes took the time to call me and tell me how bad he felt about what he put me through! I told him I knew he was doing what he had to for what was best for me! I trust Dr. Yakes and now Dr. Hepworth with my life! They both have an awesome bedside manner! They truly care about their patients well being and work with them in every way possible! You know how some doctors can be - they don't have time for their patients, or care to listen to what their patients have to say or have time to answer questions! I wanted to include a photo of myself with Dr. Yakes from before one of my procedures! Unfortunately when our last computer crashed - there went a ton of photos from my Denver trips, so this photo I'm posting is not that old! Oh well! I just thought it was very classy and cool of Dr. Yakes to call me and let me know how he felt!
Then I got a call from Donna, the lady that schedules surgeries in Dr. Hepworths office, letting me know I needed a referral from my PCP before my surgery mid April! I wasn't exactly sure of the date, so Donna confirmed it was set for April 16th! Put the brakes on! That is way too soon! I have too much going on in my life right now! I e-mailed a note to Dr. Hepworth and his P.A. Kris asking them if it was possible to move everything back @ least a month! Between the fact that once I ran out of steroids, I was feeling the pain again, bad! I mean on a scale from 1 - 10, I was almost @ 10! I was having to take my main pain killer - the Oxy, then an hour or so later, taking a Neurontin - a supplement to the Oxy .... then having to also take a Lortab several hours after that because I was still in pain! Yikes! Not to mention that the "debulking" surgery scared me to death, even though I trust Dr. Hepworth to know he knows exactly what he is doing - he is so awesome! So is Kris - they just make the patient feel that they are super special and thier BFF! First time we met Dr. Hepworth, he gave us a cell # where we could always reach him! So I told them I need to be ready for that surgery physically and psycologically! April 16th was too soon for me after how difficult the past embolization was! If all that wasn't enough, we've had our Hanzie in the hospital the last several days! It's all my fault too! We know better than to feed Hanz people food - but he's so darned cute and begs while I'm eating - he even touches my arm with his paw as if to say, "hello, I'm here and wanting what you are eating"! So, last week Monday, I was feeding him small pieces of that seasoned fajita meat from a local grocery store that we frequent and it was so delicious! Mark had cooked that out on the grill and we were having that with the works! Later that evening, we saw how much Hanz had to eat because he threw it up! Poor baby! Had Mark take him to the City Vet and was told to give him Pepto-Bismol. Course Hanz still threw up - took him to another Vet. they took blood so they could rule out pancreatitis! Got a shot of antibiotic, some antibiotic to take in liquid form and another liquid to "coat his stomach" and Hanz is still thowing up. Back to the City Vet and he recommended we take Hanz to Windsor Park Animal Hospital and we did! Had to admit him for several days so he could get nutrition and fluids on an IV as he didn't really have any nutrition going in! See photo of Hanz and I @ hospital! Brought Hanz home Thursay - hadn't been home but a few minutes when he threw up again! NO! Not his food, just bile. Mark picked Hanz up and drove him right back to the Vet.! They already had turned their phones over to the service! Mark pounded on the door until someone answered - the lady Vet was in, we had not met her yet, but she gave Hanz a shot that she said would burn, and Mark said Hanz did feel it with a little yelp! The shot was to soothe and settle his stomach, which apparently it did because Hanz has been fine, Thank God! Hanz had an inflamed pancreas so he is on a special diet of very easily digestible soft dog food for a month or two, until we can go back to his regular dog food and NO MORE people food! It's great having Hanz home again! We missed having him underfoot and his darling, cute self!
So, I get an e-mail from Kris @ Dr. Hepworth saying there should not be any problem putting the surgery off a month or so! Whew! I need that time to regroup and process everything that has happened lately! Ok! I am going back to bed now! Hanz is here next to me and we both want to enjoy resting some more!
As always,

We thank all of you for your prayer and well wishes! We will keep you posted on when my next trip to CO will be! I appreciate all of you! Take care and have a Blessed Easter Weekend!

Cyndi Schuman

Feeling Good!

Hi to All!

I just wanted to take some time to give you an update and add a few things here and there about our recent trip! I start remembering more as I feel better! Once the "shock" of the entire incident has passed and my pain is under control .... I just wanted to let all of you know that I'm really doing great!

It never seems to fail, that right before one of these trips, I always seem to only get anywhere from 1 - 3 hours sleep the night before! Soon as Celia and I boarded the plane from Dallas to Denver, I was giving in to the sleep I was deprived of! Course I ended up in middle seat, Celia was in the isle seat, and there was a middle aged man on my right @ the window seat. As I drifted off, I kept leaning toward the right, and Celia would pull me back upright from my t-shirt! Course I'm sure it didn't help any that I was snoring! Celia says she finally slipped the man a note that said, "Please excuse my sister - she is heavily medicated and on her way to have a medical procedure @ a Denver hospital". She said he just smiled and nodded - poor man, what could he do? I asked Celia why she didn't swap places w/me, but she was afraid I would lean over toward the isle or be bumped by people on the left side of my face. True.

Once I was placed in a room after the procedure - I remember the nurses looking for the little "cap" that goes over my trache. When I was having a "hard time breathing", we had called Dr. Hepworth (thank goodness first time I met him he gave me his cell #!) and he suggested removing it would help my breathing process. Well that's good, because no one seemed to know where that darned little cap was anyway! The nurses were asking Celia - how would she know? So, I was given a new "cap" to put back on when needed, and my original trache cap was found, so now I have an extra! Works for me! I have had a HECK of a time trying to find the right size trache - the part that goes in my neck, not the collar that goes around the back of my neck. I expressed my concern to Dr. Hepworth and he misunderstood @ first and gave me like 20 of the collar strips that go around the back of my neck that hold my trache in place! Eventually though, I think I found out during my procedure, I was given a brand new trache, PLUS, Dr. Hepworth gave me 2 brand new ones too! Very cool! Now we can swap them out and clean them. The Respiratory Tech had told me to replace the back collar once a week, but the part that goes inside my neck once a month. Dr. Hepworth would rather I replace the whole thing once a week - @ the most two weeks. Just some of the fun things that take up our time around here, you know? Mark of course has been an awesome Wound Care Therapist/Tech/Nurse!

I do have to remember NOT to over do! I start feeling better, and expect to be "back to my old self", but no way! I need my rest and there is SO MUCH to do to keep things going! We had asked Dr. Hepworth if I had to work w/the Therabite the rest of my life and he said no! I meant to elaborate on the conference Celia and I had with Hepworth and Yakes! Celia and I were glad to see that both doctors were in complete agreement with what the next step would be! Dr. Yakes is very soft spoken and has a wonderful bedside manner - they both do really! Dr. Hepworth is so confident and enthusiastic that you just get drawn in and excited about how he is feeling! When our meeting was over, Dr. Yakes gave me a big hug and kiss on the cheek! Dr. Hepworth had a big hug for me as well - these men are so awesome!

Did I tell you how delicious food is on steroids? YOWZA! I'm just happy that I am now capable of a dry cough and to swallow! A couple of lifes luxuries that we take for granted! I just got up not too long ago and I'm thinking of heading back to bed again! Get all comfy w/my book, update my meds and relax! Was this what I did? Nope! A co-worker had wanted to get together to go to some hobby stores and get what we need to learn how to knit! Actully, Mom had told me she had a ton of yarn, and my friend already had the patterns, so all I needed was the needles! Can't wait - we'll work on that after we eat our lunch on Monday!

Oh! I found a couple other views of some photos from the trip - just to fill in a little of the gap! Thanks for listening! All of you are such a big part of my life and we appreciate you so much!

Hugs!

Cyndi

Part II of Denver 36

Here I am again! Ready for Part II? Originally, my scheduled time to report to Swedish on Thursday morning was 11:00 a.m. - luckily, there must have been a cancellation, because Sadie let me know that now I was to report in @ 7:30 a.m.! The earlier the better! Usually the kids or elderly and diabetics get put in first, but the later I get in, the harder it is to get a room later, plus having to go longer w/out eating, etc.! Anyway, I get all pre-registered, then head over to get prepped for the procedure! I already knew I would be seeing little Arie that has an avm on her lip. She and her family live about an hour away, and her Mom Jodi had written to me that we would all be there @ the same time! Arie's Dad Denny was there, along with the grandparents! I was able to go over and get a photo of us right before Arie was taken in for her procedure! See her cute gown? That's an original Shalon creation for Arie! I think after this procedure, Arie may not have to come back for a year, just to make sure there are no signs of any avm left!

Mary (a/k/a "Boston") starts getting my IV going and all my information updated on their computer system. I'm already dozing, and somewhere in between, Celia gets a picture of me holding Saba!

Oh! Shalon left me a cute little surprise in the prettiest bag! Before I was taken in for my procedure - Kelley hands me something. I look in it and find the cutest purple snuggly socks that have little pink ridges on the bottom making them non-slip! Thank you Shalon - I put those to good use! You can see them in the photo of Celia and I when I'm holding Saba the bear!

Shortly after that, one of the anesthesiologist, Quinn, comes over to talk to me about how I'm doing. All seems in order, so I start getting transported to the surgical area. I remember moving over to the bed the procedure will take place in with Celia hugging me and waving goodbye @ the door! Next thing I know, I'm waking up in recovery. Of course Dr. Yakes did an angiogram, so I have to make sure and keep my right leg straight and not bend it. I pull myself to my right side and hold on to the bars on the bedside just to get off my back, as I have no back support and that hurts my lower back. I am realizing I can only take shallow breaths, and feel like I have a lot of phlegm I wish I could spit out. Normally, the most cc's of alcohol Dr. Yakes has used is like 22 or so - because if he uses too much, some of that alcohol traces back out and "burns" my skin! Come to find, Dr.Yakes told Celia he used 38 cc's of alcohol this time! WHAT? Course later, P.A. Kelley explained that probably half of that was "contrast" - a dye to make sure Dr. Yakes could see exactly where the alcohol was going?! He was working all along the lower part of my chin that hangs down, as Dr. Hepworth is wanting to debulk in that area next time I'm in Denver! So Dr. Yakes was trying to shut down some of those arteries!

So by the time I get put into a room after being in Recovery, I'm still having a hard time "breathing" - feeling like I cannot swallow or spit up the phlegm I feel is clogging my throat, so I can't speak! I can hear and feel the gurgling of the phlegm near the surface - UGH! Respiratory comes in and sets me up with the humidifier cup over my trache for moisture, hoping that would loosen that phlegm! Meanwhile, here is a photo of me still in recovery - and I think I look pretty good considering I don't feel well @ all! I had a very caring and considerate post op nurse, so that helped make me feel somewhat better!

Celia was allowed to come back in and sit by my bed in Recovery, so that was nice having her there! Finally, we got word that my room was ready, so we headed up to the 6th floor! Once I got settled in the room, one of the Techs that has taken care of me before had come in to take my vitals - her name is Zulan! She is very sweet and helpful! At one point, we're trying to figure out WHY I can't breathe well, and of course part of the problem was, when Dr. Yakes did the embolization - the swelling went inward, therefore blocking my airways! So I'm thinking, "why am I not hearing the word "Decadron"? That is the steroid that gets injected into my IV to reduce the swelling. Come to find I was getting maybe 2 mg of Decadron in my IV when I could have been getting like 4 or 6! THAT would have helped in the breathing department sooner! Plus, somewhere along the line, there was a miscommunication that had anesthesia or someone thinking that I needed my trache to actually breathe, when I really only needed it for putting me under during the embolization! So, the little balloon inside or that hangs out or both, were inflated some, when they needed to be completetly deflated in order for me to breathe on my OWN! Once that was determined by respiratory and my writing them notes and calling Mark to ask about it, and we upped the decadron, things started looking up a bit. Meanwhile though, I'm needing something for pain, and my body wants Oxychodone. That does not come in liquid form to put in my IV, so the nurses are giving me Morphine. My body says, "No, you need the oxy"! Guess what though, since I can't swallow, I can't take the oxy pill I need! My body is figdgeting and restless, so the nurses are giving me more and more valium to "relax" me because I'm panicing because I can't catch a deep breath! I'm afraid to let go and try to sleep because I'm feeling I can't breathe normally on my own! Usually, by the evening of the procedure, I am eating, talking and then take a shower to get the blood out of my hair! Since I can't swallow, I'm pretty much stuck not knowing what to do next! I remembered we had a dear friend in choir that passed away several years back - her name was Peggy. I can't remember the name of what she had, but from what I remember, Peggy could not swallow toward the end of her days and I can just imagine what a terrible feeling that must have been. Why do people have to suffer so much?

Here is a photo of the nurse waiting to see if I can handle an ice chip! A teeny sip of juice or water made me feel like I was drowning! Panic, panic, panic! "Hail Mary Full of Grace ..." I didn't want to overexert myself and not be able to catch a deep breath, so I wasn't about to attempt a shower! That would take too much out of me! Once in a while, Respiratory would come in and would ask, "Do you want me to suction you out"? Hoping to get the phlegm out. So a thin tube would be stuck down my trache until I could't take it anymore and I would start pulling it out because it wasn't doing any good except choking me and making me cough! You know who I thought of alot @ this time? My brother-in-law's Mom, Pat Fossum. She spent the last few months of her life in a hospital in Houston and suffered so much. Pat would have to be suctioned out by respiratory - she had emphysema and other complications that made her life difficult toward the end. My thoughts and prayers were sure with her. Celia spent lots of time praying with Pat while she was in that hospital in Houston, and now ,my poor sister Celia having to see me suffer too! She never once complained and this a high maintenance woman folks! Celia spent several nights with me in the hospital, as I was afraid of being left alone and not being able to get a nurse fast enough to let someone know I wasn't breathing! I think one night I only got a half hour sleep. Celia would get up with me every time I needed to use the bathroom and help w/my IV and untangle all my tubes and my wires! My IV first started off on my left hand and somewhere along the line, one of the nurses felt she needed to move the IV to my right hand. This gave me several days to have some IV Antibiotics to really get my darned ear infection cleared up! I needed that BAD! Finally I think on Saturday I was able to swallow a pill! What a HUGE accomplishment! That meant my beloved Oxy - my best painkiller was on the rescue! Slowly I was able to take little bitty sips of juice and you'll see a photo of me trying a little cup of ice cream! What a luxury! Wow - I thought I had a photo of me going for some cream of wheat - soooo delicious! (I found it! Check out how happy I am to go for that bowl of cream of wheat! That always reminds me of Grandma's house - she would make that for us)! All along we kept thinking, "how long before I can swallow"? I can't leave the hospital until I can swallow! I went four days without eating or drinking anything! The nurse kept wanting me to try and eat some applesauce with blue dye to see where it would be going, but there was no way for me to swallow anything!

I think it was Sunday when I finally felt up to taking a shower and guess who helped me with that? The REAL Saba! She is such a dear - she was happy to see me and helped wrap up my IV with plastic and got me all ready to get cleaned up! Meanwhile, Celia would take a short trip to the hotel to shower and take a power nap or surprise me by bringing me those cool, funky dutch shoes that I liked so much! WOW! My poor Mother was in a panic @ home and I'm sure crying to her siblings with worry over what I was going though! This was almost as tough for me a the trache trip! At one point Celia thought maybe having Mark with me would help, but after looking into a flight - that would be costing $1800 and that was ridiculous! Mom was wanting to get my Mark, get in the car and start driving to Denver! As it was, my brother-in-law Greg is an angel and told Celia to take care of all my medical needs/costs! From getting our airline tickets, the car rental the hotel, prescriptions - you name it, she paid for it! We are so blessed to have such a loving, generous family that offer so much prayer and faith! My dear friends Felice, Patty, Terry - choir members that called Celia - Aunts and Uncles praying rosaries - Thank you from the bottom of my heart! This is one TOUGH time for me! Celia had told me she had gone to Adoration before our trip and said that as she prayed (and I hope I get this right) she felt God talking to her - telling her that He would not leave me and would be with me all along durig this time. Celia said she could hear Him say for her to take care of me and for her to share this with me, that He would be by my side! Where would we be without our Faith? I can't wait to read some prayer books that my Aunt Eva sent me in the mail! I'm excited about that!

One of my favorite nurses came by to say hello - Dave Labadie! He was one of the original "Dream Team" from the very first embolization I ever had @ Swedish! Dave is an awesome nurse and he makes you feel you are in very capable hands! I had two other nurses (female) that I had been taken care of before that I really enjoyed - one other nurse was new to me and she was very good! One of the Anesthesiologists Assistants came by to check on me as well - she said Quinn was wanting to make sure I was ok! One of the male techs that I had before taking my vitals was a hoot and it was nice to see him! Lots of great folks working @ Swedish - after going 6 years I'm getting pretty familiar with the group!

I'm going to draw this to a close - could not WAIT to get home from work today! I really should have taken more time off work, but I just don't want to use it all because I'll need it for the future!

Know who was on our flight from Dallas to Corpus that we didn't even know about? Dr. David Miller - he is a Pulmonary Specialist and went through throat cancer! A fellow choir member while Mark and I were still in choir - when I found out what David went though and endured - that gave me the courage I needed to jump in and get all my avm appt.'s going! David has been such an inspiration for me! I have always been able to turn to him for advice and he has always been such a comfort to me! Here he is posing with Celia for a photo! I was telling David I was afraid of the debulking process and he said to stay positive! I was so happy to see my family @ the airport! Here, Hanz and I are going for each other to get a kiss! I missed Mark so much! It was great to see Mom and Vicente and of course Greg rounds up our family! Mark Fossum had plans for the evening and Davis of course is in AZ! I think Celia and I have learned how strong we can be when we have to - we get that from our Mom! Time for bed - Goodnight! Love to all!

Mark & Cyndi

P.S. Soon I will start preparing for the April visit by taking some iron pills and probably getting a transfusion @ Dr. Yakes and Dr. Hepworths suggestion, as I am borederline low and need to get my blood supply up before I lose any more during the debulking in April! Thanks to all of you for your continued prayer! Thank you for following us on the Journey!

We're baaack! And what a relief!

Greetings everyone - Family, Friends and Prayer Warriors! This blog entry may be in several parts - we'll see how much I can get done tonight! Our first big adventure started shortly after Mark and Hanz dropped me off @ a meeting point where Celia would pick me up and drive on to the airport! Got settled into Celia's car and immediately started catching up! This was like @ 4:45 a.m. and next thing you know, we missed our turn to the airport and got lost! Our flight left @ 6:00 a.m. and we ended up on some back country roads! Our Good Lord guided us - because the gps wasn't doing that great a job and we could not believe it was as if time stood still - we made it! To boot, we kept hearing that there would be foggy out, but it wasn't, so that was a big help! Made our connecting fight in Dallas, picked up our car rental and headed out to our Conference with Dr. Hepworth that came from the other side of town, to meet with us @ Dr. Yakes office @ Swedish Medical Center where I usually have my procedures! Saw Dr. Yakes patient coordinator Sadie first - she was busy on the phone and with patients. Then saw Eric, Dr. Yakes P.A. come down the hall and gave me a hug. Everyone is so friendly, makes a big difference! Next, Dr. Hepworth arrives and we are escorted to a conference room to wait for Dr. Yakes. Meanwhile, Dr. Hepworth (ENT) is checking out my trache! Dr. Yakes steps into the office and shortly afterward, so does Kelley, Dr. Yakes other P.A.! Kelley mentioned that fellow avm-er Shalon Whitgob had just been taken in for her procedure and asked if I could come by to say hello as she sat in recovery. I told Kelley I would try, but we may be on the other side of town by the time Shalon got out of her procedure.

Meahwhile, Dr. Yakes, Dr. Hepworth, Kelley, Celia and I all sat down and went over what the doctors want to do next, and apparently both doctors agree that they need to debulk under my chin area before the avm starts to compromise my airways! We sure don't want to hear that! Both doctors want to get this done soon, so @ their suggestion we are looking into late April - and that trip will not involve any embolization swelling like when Dr. Yakes works on me. The debulking will probably take place @ a different hospital that Dr. Hepworth works out of! Dr. Hepworth mentioned going in under my chin area, cutting out an oval shape section and getting old tissue and fluids out through there! Sounds very scarey to me! We asked a few questions, got them answered and felt good about what we were hearing.

By this time Celia and I both hungry for lunch, so we head out to the Cheesecake factory for lunch @ Park Meadows Mall! We both ordered one of our favorite meals; sweet corn cakes with chuncks of avocado, some sour cream and something like chipolte sauce! We also shared a nice, big salad that had green apples, corn, greens and vinegrette dressing! See photo! Course we each decided we had to order a piece of cheesecake and I went for the key lime cheesecake and I think Celia went with the raspberry lemon ladyfingers cheesecake, or something to that effect!

After lunch we of course had to take in some of the mall sites, since we don't really have a good shopping mall here! Found a neat shoe store that Celia picked up some dutch clogs @ - I had liked some that had a flower print to them, but I wasn't in the market to shop for shoes! Celia picked some out that were navy blue and had little sparkles on them! I had told Celia I've been wanting to get some dark blue jeans, so we went in search of those! Course that is something really too time consuming for this type of trip, so I abandoned that idea right away! I always like to see the puppies @ the Pedigree Petstore, so we headed that way just to see how cute the puppies were! See photo! There were no pure bred Brussels this time - boo, hoo! That's ok - I have the cutest one in the world @ home waiting for me! I just enjoy being able to pick the pups up sometimes!

Had to go check Borders Bookstore out, since both Celia and I are such big readers! She generously volunteered to buy me another copy of the Stephenie Meyer book Breaking Dawn that I was carrying and was in tatters as I've read it 7 or 8 times! Should have taken her up on it, but had told her we were headed to Wal-mart later and we would get it then, darn! We were really trying to squeeze in some fun things before I knew I would be stuck in the hospital the following day. Boy, am I ever glad we did - we had no idea of the nightmare ahead! Celia had already volunteered to buy me the jeans I wanted, but It just wasn't a jean shopping trip. I always love going to see the latest @ Build a Bear, so Celia helped me choose some cute outfits for Saba and that was her gift to me! We did go to Wal-mart, but didn't find Breaking Dawn - went to Safeway for some specific cookies I like - little did I know I almost didn't even get to taste those! I was also looking for my favorite spray starch @ that store that I just don't find in Corpus Christi anymore!

So, we finally make it to the hotel and get all checked in! We had a 2 bedroom suite - very nice, w/a kitchen, living room and dining room table! We get all settled in and then decide that the lunch leftovers were just not what we were wanting for dinner - so Celia decides we go find a Diner that she and Mom enjoyed when they were both w/me when I had my trache surgery in November! It was a decent dinner, so after we ate, we settled in for the night! I'm ending this now and will continue immediately afterwards, just to take a break in the story!

Cyndi

Would you like a little cheese with that "Whine"?

Hi Everyone!

I've been wanting to sit down and blog a bit, but hadn't made the time until now! Mark says I shouldn't whine, but I don't look @ this in that way! It occured to me the other night, as I was getting ready for bed and putting my mist cup on my trache - that I really have a hole in my neck! UGH! Even though I know it makes things easier all around for me to have this trache - it certainly wasn't easy getting it done and it isn't much fun maintaining it either! The very best thing about it is that I don't need it to breathe, I only need it when I have a procedure, because I am limited right now as far as how wide I can open my mouth and this makes it difficult for the anesthesiologist to intubate me! See photo: The mist cup is attached to a long, blue hose that is attached to the humidifier that sounds like an air compressor! Poor Hanz - that used to scare him in the beginning, but he is used to mommy having to sleep with that loud thing now! See the pile of pillows behind me? The first pile is covered in a twin size allergen cover because I'm allergic to dust mites - actually the entire bed is covered in a king size allergen cover. The top pillow I need for the neck support and has it's own pillow case allergen cover.

I've really no right to complain about anything - I was just telling Celia that over breakfast on Sunday. I have everything I need to help with my avm situation: whatever I need monetarily - thanks to such a generous family! Complete love and support from my family and friends, so many prayers, novenas, and Masses said for us! Our faith and wonderful doctors, physicians assistants, anesthesiologists and nurses that are outstanding! It has been a very long road though, and I like sharing with you some of what I go though, so that you can really feel like you are experiencing this with me! This is OUR Avm journey!

There sure are days that I would love to call in sick to work - but that would only mean disappointing myself, knowing that I could try a little harder and make the best of my situation! Every day I travel to work with a "cart" full of all my needs - my wound care bag - in case I should have a "bleed" and need to put a dressing on the left side of my face where I'm still healing from a wound caused by alcohol tracing back out on to my skin and "burning" it. I have NOT had a bleed @ all since we got back from CO in late January! That is so awesome! Used to be, I could be sitting @ work when I would hear a co-worker say, "You're bleeding"! Yikes! Put pressure on the area and get it to stop! So glad that is behind me for now! That takes a load off right there! Unfortunately though, I am getting some drainage from my left ear, so that is an uncomfortable feeling. I have a "hole" in my eardrum, so I can't hear from my left ear! That's frustrating to my co-workers I'm sure, that I'm constantly asking them to repeat something! We're hoping that can be repaired after this whole avm nightmare is overwith! I can also hear my pulse in my ear constantly - 24/7, so I try and put that out of my mind!

Other things in my cart include my medical bag that carries all my prescriptions! I have to write everything down that I'm taking or I'll never remember it! Must have snacks - especially if I'm on steroids - I'm ravenous and must have snacks! My favorites include kettle corn, poptarts, danishes, candy corn and juice! Plus whatever I take for lunch! I always carry a book and some magazines that I can read during my lunch if I dine alone in our office breakroom and of course I bring Saba with me to work every day! Saba is my Build a Bear that goes with me to every procedure in CO since I got her! She makes me happy and I love dressing her in cute outfits and she sits on my cd player on my desk! I had a lady that works across the hall from me ask about my bear. She thought that maybe I brought her to use her in some work related way. No, I told her, "the bear is mine, her name is Saba and she makes me happy, so I bring her with me to work every day"! Lots of other people have stuffed toys in their office - I just like changing the way mine looks and I don't want to leave her alone @ the office @ night! I'm surrounded by photos of Hanz on my desk and bulletin board, so I try and make my 8 hours @ work as pleasant as possible! I have a very understanding supervisor that really takes into account everything I'm going through and is very happy that I give 100% to my job! I love what I do and every day is an adventure!

Almost 2 weeks ago I had started feeling pain on the left side of my face. I was in denial that I had a possible ear infection. I wasn't wanting to be admitted to the hospital and put on IV antibiotics as I've had to be a couple of times in the past! I finally gave in and went to see my primary care physician and I got a shot in each hip and some antibiotics, so I finally got that pain under control! Taking steroids lowers your immune system, so I tend to get those painful ear infections! OUCH! Trying to keep my pain under control @ work gets tricky @ times - I was taking 3 different pain killers and it still wasn't helping - until I went to my doctor and got an antibiotic! I am such a happy camper when I don't have to deal with pain! I get people that work @ the courthouse actually stop to ask how I deal with so much and still look so happy and full of energy! It's all in the medication! No, it's all the love and support I get from all of you! I do know how very blessed I am! Do you know what my amazing husband Mark did the other day? He changed out my entire trache completely - by himself! Our dear friend and neighbor Terry Serna is a respiratory tech. and she had changed out my trache the first two times - and now Mark felt ready to do it on his own and he did a fantastic job! The other day I just looked at him and thought, "Wow, this man is taking care of me and patiently waiting for me until I am feeling better"! Not only does Mark take such great care of me (Mark always checks the water level in my humidifier mist cup I strap on my trache @ night), he is my wound care expert, ear drop applier, ointment slatherer (is that a word?) - but he takes wonderful care of Hanz! Our baby Hanz brings us both so much happiness - Hanz has been the best distraction for me from this avm! Mark bathes him, cuts his hair, trims his nails and cleans up after him. I do a little of the latter and feed him (I share my sushi with Hanz!) and love him a LOT! We both enjoy taking Hanz for a walk when we get home from work and you should see Hanz just strutting up ahead of us - just loving that his mommy and daddy are walking him! Of course he's high maitenance like his mommy! We don't go walking until we make sure we have poop bags, wipees if needed, treats for when we reach the end of the street - Hanz knows to sit, he gets a treat and then we pick him up to cross the street! Water of course in case Prince Hanz gets thirsty on his walk! Hanz was such a hit the other day when we picked up some chicken @ Churches for dinner! Several of the workers gathered around the drive thru window to admire our cute kid!

My next trip to CO will be March 10-12th and this time Celia will come with me! We will be meeting @ Dr. Yakes office, and Dr. Hepworth (my new ENT in CO) will be there and both will talk to us about why Dr. Hepworth feels he is ready to debulk the area under my chin, and Dr. Yakes wants to wait and take care of more of the avm by doing more embolizations before we even think of debulking! Yowza! Just don't let me bleed to death, ok?

My meds mess with my sleep schedule and that disrupts poor Mark and Hanz too! The pain killers make me very drowsy, and when I'm on steroids, they make my hyper! Mark has just learned to take it in stride if he wakes up @ 4 a.m. and I'm sitting up reading! There are times I'm on 2 hours sleep and I'm fine - until I crash off the steriods and sugar rush I've been on after a few days!

I must have jixed myself, because I had a minor bleed today @ work. Totally my fault! I put some antibiotic ointment on my scab on the left side of my face - this ate away @ the scab and next thing I knew, the kerchief I was wearing felt wet on the left side! Sure enough, I looked in the mirror to find I was bleeding. It was't arterial, but a trickle of blood that I needed to get stopped asap! Grabbed my wound care bag and headed to the bathroom! Soon as I wet a paper towl and put pressure on the area, it stopped bleeding right away! I ended up having to change out most of the trache on my own! Usually, my friend Diana helps w/my medical stuff, but she was @ a Training for the next couple days! You know how it is when you look in the mirror - everything is backward - so I put the trache collar on inside out the first time, but then was able to fix it and put in a new drainage sponge too - TADA! Good as new! The only thing was, I felt a bit exposed w/out having a clean kerchief to replace the one I had gotten blood on! Note to self: add clean kerchief to cart and extra polo as well!

Let's see .... what other kind of fun have I been having? Oh yeah! I had gotten away from using the Therabite because I always seemed to have another fire I had to put out that really needed immediate attention! Now, I can barely open my mouth to eat so I have no choice but to get to work on that Therabite again! From having these procedures, it has limited the amount of space I can open my mouth - and the reason that I ended up needing the trache - because anesthisia could't intubate me properly anymore! So, this is another part of my routine, making time to work w/the Therabite!

The last month I had been dealing with an ingown toenail that I decided needed to be taken care of! Mark had seen a Podiatrist a couple of years ago, and I really liked her, so I had an appt. w/Dr. Phillips this afternoon! She removed my left, big toenail! Gah! She said I had better meds for pain already than anything that she would have given me, so I should be fine! The numbness wore off a few hours ago, so I'm feeling some discomfort! During my office visit, I thought she would be struggling to pull off that toenail - but I didn't even feel a tug! She's my new best friend! Ha, ha, ha!

Oh! It's cold out and Mark made the most delicous pot of chili and some corn bread johnny cakes! YUMMY! Food tastes better on steroids or some tastes differently, but dang this was good! Poor Hanz kept hoping for a little taste, but all I could give him really was a bean or two! I'm ready to have it all over again for dinner tomorrow night!

Ok, it' off to iron my clothes for work and then to sleep! Hopefully, by tomorrow, I can insert some photos on to this blog! Good night! Thank you everyone for all the love and support you give us!

Mark & Cyndi Schuman

P.S. 2/27/10 - I can finally post some photos! One I had already mentioned earlier - me with the mist cup humidifier I'm attached to every night. Of course Mark and Hanz - the loves of my life! An extra photo of Hanz because he's Mommy's Angel!

Denver 35

Greetings Family and Friends!

As always, I like to keep everyone posted on my progress as we fight this avm! I was really looking forward to this trip, I just wanted to see "my people" that understand me completely! So here we go! It never fails, we got on the plane on an hour or two of sleep - we always seem to pack very late and last minute and have a very early flight! We had an empty seat between us from Dallas to CO - so Saba had her own seat! We arrive in CO @ 9:30 a.m. on Wed., Jan. 27 and the weather was nice! The sun was out and it was chilly enough for a light jacket! Picked up the car rental that Mark really enjoyed! It was an Infinity!

We headed toward Park Meadows Mall, as everything we needed to do was in that area! I figured we'd kill a little time @ Borders bookstore, then have lunch @ Mimi's Cafe and then go on to my appt. w/Dr. Hepworth's office in the same area! Luckily we got there early for the appt. because it turns out, our appt. was @ his other office, closer to Swedish Medical Center! At this point, Dr. Hepworth feels he can go in and debulk the mass under my chin without it interfering with what Dr. Yakes feels he still needs to work on some of the avm in my cheek/ear area! So at this point, the doctors are discussing what they will do w/me next! Here are photos of me @ Dr. Hepworths office - he is putting ointment on my scabby area near my ear and inside it as well! The other photo show Dr. Hepworths P.A., Kris Pacheco! She is super nice and we like discussing what books we've just read!

After this appt. we went to Safeway to try and find items we can't get anymore in Corpus - like my favorite spray starch that comes in a spray pump bottle! I also found some face wipes I like to wash my face with that are NOT premoistened, so got some of that! Headed to Whole Foods to pick up something for dinner before going to the hotel and calling it an early night! This was going to be our first stay @ this hotel, as the Four Points Sheraton we always stayed @ was being converted to an assisted living place. This new place was a suite, so it was nice having a refrigerator, microwave, an oven, coffee pot and dishes, glasses, utensils! There are time we aren't too hungry, so this will be convenient to have something like soup if that's all we want! Wouldn't you know that for whatever reason, there was none of my favorite corn chowder soup @ Whole Foods! The bed was very comfortable and we had plenty of pillows, so we got a good nights rest!

I had to be @ Swedish by 7:30 a.m. to pre-register for my procedure, so here I am, next to the car before we leave! Maybe an inch and 1/2 of snow fell the night before! I had dressed Saba in a pink onesie and a denim skirt - but before taking off on this trip, my friend Felice asked me to make sure I made it to the post office before leaving for CO! She had sent me a couple of things for Saba to wear! She knows what an Olympic fanatic I am, so she sent an olympic sweatshirt w/a hood that has little slits for her ears! She also sent a t-shirt that says USA and it has sequins on it! How cool is that?! Thank you Felice! Everyone commented on Saba's sweatshirt!

So, got pre-registered and headed to ambulatory care to get ready for surgery! One of our favorite nurses is no longer in this area, but went on to Maternity Ward, so no more Sue! Our other familiar nurse was there - we call her Boston, as she has a heavy accent, but her name is Mary! Here she is, along w/Dr. Yakes P.A. Kelly! Got a nice surprise visit from another favorite nurse, Rick! He works in recovery, although he wasn't working on this day, but it was great that he stopped by to say hello! One of the anesthesiologist stopped by, Wendy - she said she was thinking of me the night before and worried about intubating me, since she knew I couldn't open my mouth too wide. She was happy to see I had a trache now, so it would be easier and safer for me to be put under! It was finally show time, so I get wheeled to surgery! Got a few minutes to talk to Dr. Yakes. Told him to go easy on me and that I didn't know how much more I could take! He assured me that we were going to beat this avm and we were going to win!

Woke up in recovery and my back was really hurting from laying flat due to Dr. Yakes doing an arteriogram! I normally sleep w/pillows under my knees for support! So I grabbed on to the side rail of the bed and pulled myself on my side and that helped the back pain! Got some morphine and ice chips and I didn't feel as bad as I have in the past! The nurse told me she was having a hard time reaching Mark - that she was getting a recording that it wasn't a working number! She finally tried dialing slower and got through! By this time, it was time for me to get to a room and Mark met me up there! Shortly afterward, Eric, Dr. Yakes other P.A. stopped by to see how I was doing! He always comes by and gives me my prescriptions and dismissal papers, that way, we can leave first thing in the morning!

Had very good help as always - here is a new tech we met named Zufan and she is from Africa! Sweet and helpful! Since Dr. Yakes only used 8 cc's of alcohol, I wasn't too bad off, and he did not work inside my mouth, so as soon as I could sit up, I was drinking juice and having pudding! Just had some blood in my hair - but I was able to take a shower that evening and get it all out and felt better! Mark stayed with me a bit and we watched the Star Trek movie courtesy of Swedish! After Mark left, I dozed off a bit, but woke up @ 3:30 a.m. and I watched The Proposal and then some movie about a dog hotel! Of course I was missing my Hanzie, but we got updates from my brother-in-law Jim about how Hanz was having fun and falling exhausted at bedtime!

Next morning after Mark showed up, we got all our stuff and went to say hello to Sadie, Dr. Yakes Patient Coordinator! She does so much that is neccessary to get my appt. scheduled, so we like to stop by and touch base with her! Also, with Mona, Dr. Yakes office manager! These ladies have to deal with insurance and all sorts of paperwork to get me up there!

Soon as we left the hospital, we headed to Wal-Greens to fill a couple of prescriptions, then to Whole Foods again to get something to eat that we could take on the plane with us! Repacked all our stuff @ the hotel, checked out and headed to the airport! Here is a photo of me probably talking to Mom and telling her we were getting ready for take off!

As always, thank you so much for all your love, prayer and support! Still no telling how many more procedures I have left, but it's got to be done slowly. In May I will be going to see Dr. Yakes for 6 years! Yikes! Our plane was late getting home, as it had to be de-iced in Dallas! It was great to get to the house, but it didn't feel like home until we picked up Hanz the next day from Jim and Shelleys house! It's great to have out little family home together again! Take Care!

Love,

Mark and Cyndi

Trache Change!

Hi Everyone!

How's everybody been? Busy, huh? So much to do and not enough hours in the day, right? Just wanted to write a little bit and tell you about changing my trache out last weekend! I have to change out the entire trache thing once a month! The "collar" that goes around the back of my neck, gets changed out once a week by Mark and I can do the gauze sponge that goes in the front by myself and I do that twice a day! Since I sleep w/a mist cup over the trache area that is attached to a hose going to a humidifier, the gauze sponge up front tends to be wet in the morning. I am so lucky my neighbor and friend Terry Serna lives 2 houses over - she is a respiratory technician and she comes over to change out my trache for me! Glad she did and that we didn't let Mark do it on his own, because we had a little bit of trouble! The skin is closing in around the trache area and when I had ordered a replacement trache from the supply company, we got the wrong size! It was too big and Terry was having a hard time getting it in there! Yikes! Fortunately, we had my original one sanitized and put away in a brand new tupperware container, so we used that! We'll have to see what size they use when I go to CO next week for my procedure! Hopeing all will go well - the insurance is saying I've reached the million dollar mark - so we have to assure them again that there is NO ONE ELSE able to help except Dr. Yakes, so they need to pay him!

I was off work on Monday and ended up having a bad bleed from inside my mouth! Luckily Mark came home for lunch and came in about 5 minutes after the bleed started! It lasted almost an hour! Hopefully Dr. Yakes can put an end to anything like that happening again! You know, when things like that happen - it is so discouraging! My Mom is always telling me how brave I am, as are other people - but I'm really not. I'm angry about all of this @ times - tired of dealing with everything! Seems I'm always having to find a way to cope w/some problem I'm having because of the avm! Now I'm sleeping w/my bed wetting alarm again in case I bleed during the night from my mouth! Gotta make sure it doesn't get in the way of the mist cup though! Plus of course I have drainage coming out my ear and scabbing inside and around it - ugh! I have to work w/the therabite again because I can't open my mouth very wide, but I had gotten away from it from trying to deal w/all the trache stuff! Agh! We look forward to these trips to CO because we know we are in good hands up there! Poor Mark can finally rest knowing Dr. Yakes and the P.A.'s are taking good care of me!

I just have to say that I am so very blessed to have such an awesome husband that takes care of our household while I can't hold up my end of the deal! After a long day @ work, neither of us feels like doing much, but Mark fixes dinner and most times cleans the kitchen too! Plus, Mark makes sure Hanz has everything he needs, from replacing his pads, to getting any meds, haircut, his nails filed! I just make sure Hanz gets lots of love and is fed!

I would also like to add that after having that bleed, some family members stepped up right away offering to donate blood for me! From my brother-in-law Jim Schuman, to my nephew Davis Fossum! I have an incredible support team backing me up!

How is Hanz the Magnificent you ask? Well, Mark had taken Hanz in to the City Vet. and one of the ladies that worked there was telling Mark that she thought Hanz was so special and cute, she just wanted to take him home with her! Oh, Mark told her she'd have a fight on her hands on that one with his wife! My baby! I miss him all day while I'm @ work! We've been having decent weather the past few days, so we have been taking Hanz for a walk! You should see him just strutting - so happy his mommy and daddy are taking him walking! Yesterday, we walked past a lady sitting on her porch and she just had to get up and come pet Hanz! He gets so many compliments on how adorable he is!

Anyway, here are some photos - the one of Mark and I is from New Years Eve and Marks 50th Birthday! My Uncle Luis and Aunt Betty were in town from Nebraska celebrating their 50th wedding anniversary - married the same day and year that Mark was born!

As always, we thank all of you for your prayer, love and support!

Love to everyone!

Mark & Cyndi