Team Cyndi

Hey Y'all!  How are you?  I want so much for everyone to know about the avm world and what part all of you play in it - so that is what this blog entry is about!  I'll try and keep it simple, ok?  This avm is hard enough for me to understand and I'm living it - I can't expect you to "get it", although many of you really do!  Mark lives it every day with me and I know my sister Celia really gets it too!  As you know, "bleeds" can result in what looks like a CSI crime scene sometimes.  Keep in mind that other avm patients may be having a different experience depending on the severity of their avm.

I was @ Wal-Greens the other day, filling a prescription, when a boy of about 9 years old came around the corner, saw me and went, "Eewwww"!!!!!  I could tell he thought my appearance was maybe a Halloween thing.  I heard his mom  call out his name and I told him it was not polite to stare!  This isn't the first time I've experienced this - several years ago, another kid @ a Halloween carnival looked @ me and I could tell he thought my face was not what I really looked like everyday - he thought it was part of my "costume".  Mark and I ran into one of my lovely co-workers, Griselda several weeks ago @ Petsmart and she was with her son, about the same age as the two boys I had just told you about. Her son never flinched, hid behind his mom or stared - very well mannered and excited to tell us about a school project he was working on!  Kuddos to parents that are raising well adjusted kids!  You should see Griselda too - she would have every reason to be vain - has long straight hair, very pretty and dresses well - she is the classic example of beauty is as beauty does - she is very down to earth and is always willing to listen and to help in any way she can!  Sadly, I've had adults blurt out, "what happened to your face"?!  Yikes!  I'd never ask someone, "hey, how'd you get stuck in the wheelchair, or how'd you lose the limb"?  I don't want people feeling sorry for me either - just treat avm-ers as you would anyone else!  I've been impressed every morning as I get to the front door @ work @ the Nueces County Probation Office, that one of the defendants in the lobby stands up to hold the door open for me as I pull along my "what if"  bag as Mark calls it.  It's a cart full of anything that will make me more comfortable while I'm @ work.  From meds, to snacks and books, magazines, etc.
I've had discussions with some cancer survivors (co-workers) that truly are grateful and appreciative of their lives - puts things in perspective and they have a very positive outlook after what they've been through!  On the flip side, I am shocked to know someone having suffered a medical setback and appear not to have learned from their experience!  Same arrogance, false appearances and superficiality.  Wow.  Guess we all handle things differently.

As many bleeds as I've had, you'd think I'd get a handle on it.  Seems to throw me off physically, psychologically for a few days.  Takes a while for me to process the experience before being able to relax a bit.  I can't help but feel sad and upset several days after a bleed.  Can't help but feel like there is impending doom - just waiting for the next bleed.  I'm afraid to go anywhere, I want to stay home where I have what I need to try and stop the bleed.  I worry about what I can eat - although a bleed can happen @ any time whether I'm eating or not.  I can't eat just anything either, due to some dental problems - it's easier for me to have something fairly soft and not something really crunchy or hard to chew.  I want this overwith already!!!!
Mark is so great @ soaking my clothes and getting all the blood off of them.  I never can get them as clean as he does!  Celia has insisted my embolizations be no more than 5 weeks apart, as this is the only way this nightmare will be over - is to keep after it until we beat this!

I give so much credit to our maternal grandparents that set a foundation for our family of faith, love and prayer - otherwise I would not be able to deal with this hardship.  Family and friends I appreciate your prayer and love!  My Primary Care Physician, Dr. G. Boynton - I sure keep him busy as I've needed many blood transfusions.  A doctor can go his whole practice and not see anyone like me w/an avm.  Wound care techs, patient coordinators and nurses - you are awesome and so appreciated by me!  Keep up your fantastic outlook - you are in the right line of work!  If you are out there with an avm - you need to see Dr. Yakes!  He has a fantastic bedside manner and knows how to help you!  All Dr. Yakes P.A.'s, Kelly, Mandi and Andie are always so caring and professional!  Putting the patient first and always there for us!  I started with P.A. Dave, Rhonda and Eric and nurse Julie Labadie - all so fabulous!!!

Thank you Lord for surrounding me with the angels that help me get through each day and for giving me the strength to handle what I wish you wouldn't trust me so much with!  I love my life with Mark and our two furry kids Hanz and Bella!  They love me unconditionally and keep my spirits up!  I need to deal with knowing that spontaneous bleeds will be inevitable until there is no trace of the avm left!  I'll do my best not to whine about it and throw myself into the things I love most that make me happy!  Love reading, Twilight, the #1 comedy The Big Bang Theory, country music and hearing from friends!  Thank you!  My co-workers go above and beyond always offering their help and treat me so well - especially my friend Diana - she's brave enough to venture out to have lunch with me knowing I could have a bleed (and have) while I'm out w/her!

Our families help us get to Denver and to maintain our home!  Their generosity is enormous and they help us function in a somewhat normal manner!  From helping us move out of storage rooms to fixing a broken window.  Celia has come over with her cleaning lady and dusted, cleaned out our fridge and swept and cleaned the kitchen!  My angel of a brother-in-law Greg (DDS) will get me back on track, along with my nephew Mark that makes beautiful porcelain crowns/teeth that I'll need replaced eventually!  As I've mentioned before, Celia is a dental hygenist and does her best to maintain my teeth for now!  Because of the avm, I'm limited to how wide I can open my mouth, so It's hard to get in there to brush and I worry about my breath and my teeth rotting!  UGH!
I want to mention my brother-in-law Jim and his wife Shelley again - they support us during this time and help Mark keep his spirits up too!  Jim comes into town often from Rockport and takes Mark out for lunch and keeps in touch often over the phone!  My in-laws Doris and George and other family members keep me in their prayers and this helps so much!
I've had a trache for a couple of years now so that I can be intubated for my procedures and I'll have that until the avm is completely gone. Unfortunately I have some partial paralysis on the left side of my face.  Hopefully there won't be any more before this is all over!

I'm always being asked whether Dr. Yakes is really helping me and are these treatments really working?  Celia found Dr. Yakes on the internet and I would be bleeding out of control without his help!  Since my avm is facial, it is extremely complicated and time consuming!  Patients with an avm on their arm or leg can have 2 treatments each visit to Swedish, but I can only have one.  Healing varies as well - some patients experience swelling, some cracking skin, etc.  My stubborn pseudomonous infection took months to recover from - which meant being on an IV antibiotic several times a day for a couple of months and that just zapped my strength!  My family almost literally had to carry me to my doctor appts. and wound care during that time!

I miss being the kind of friend I like to be, that sends gifts and cards and shows her friends how much she cares.  I miss you Dorinda, Felice, Patty and Sylvia!  I just can't function like I used to right now, but I have hope that my life will return to normal in a few years!  I miss being a woman in love that enjoyed Mark-a-ritas and wish I could roll on the grass with Hanz and Bella!  I miss my hobbies of rubber stamping, calligraphy and cross stitching - I just don't feel up to doing much of anything.  Don't know whether my left ear hearing loss is permanent and for now I sleep in a hospital bed so I can be propped up to help the facial swelling and every night I sleep with a humidifier on my trache.  I also sleep with a "bed wetting alarm" that I pin on my nightshirt in case I have a bleed during the night - the alarm will vibrate and make a loud noise to wake me up!

I know all of this will be over one day.  I just wanted all of you to know that it is a huge team effort that allows me to be able to function!  Team Cyndi!  Thank you for helping me get through this and being part of Team Cyndi!
I welcome your questions or comments any time!
Love
Cyndi

P.S.  By the way, Celia and I are Team Edward.  Haven't seen the new Twilight movie yet - too many people out and I don't need to be having a bleed in the middle of it all!  I'll probably wait a week or so and see it w/my sister Celia and my husband Mark!  He is such a great sport about my Twilight obsession!  We rarely take in a movie - we'll venture out to see The Hobbit as well, but that'll be it for this year!  I'll try and come back and put some photos in here, ok?

dulce@grandecom.net
schumancynthia@gmail.com

Here is my handsome husband Mark holding 2 year old Bella and 4 year old Hanz!                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                              

October 2012-Denver

Hi again! 

How are you?  Celia and I just got back last night from another trip to CO!  We learn something new each time we go for me to have a treatment.  I had some questions and was not necessarily happy w/the answers.  I wondered if other avm patients Dr. Yakes has, have as much trouble w/bleeding as I do.  Yes.  I also had wondered and hoped that the closer I would get to finishing treatments (embolizations) that maybe I would be less likely to have a spontaneous bleed.  The answer was, as long as there is a trace of avm, then there is a chance of a bleed.  So, from now on until this avm is completely gone, I can have a spontaneous bleed - ugh!  I can't help but think about whether this will really all be over one day.  The answer I got was one I pretty much knew the answer to - after Dr. Yakes declares the avm is taken care of, he'll have the patient come back w/in 6 months to have an MRI done, to make sure he didn't miss an area, or that there has been any regrowth.  If there is, then there will be more embolization done (usually very mininmal) and then another 6 month wait and another MRI done to see if all is clear.  I'm thinking once a year has gone by, then the reconstructive surgery begins.  I hope not to have any more facial paralysis or chipped teeth or losing crowns!  As time goes on, I can wait a year and then longer to have the avm checked out and we make sure it won't come back!
Some of my favorite nurses - Jill, Judi and Laura came to say a special hello, as did Jason and of course Alex (a/k/a "Jacob Black") was on duty, so I enjoyed talking to him!  Burgess must have been off, because I didn't see her, and Saba has gone to nursing school from what I understand, so I don't get to see her as a tech to come in and take my vital signs anymore!  Each night I was there, Jack was my nurse and he came in the room one time to find me nearly tipped off the bed to the right!  He made sure an extra hand rail went up so I wouldn't fall off the bed!  I always enjoy talking to Victoria - she is in housekeeping and is from Africa!  Always in a good mood and assures me I will recover completely as she has seen many patients do so!  She keeps me in her prayers and that is very much appreciated!
The day before being released from the hospital, one of the nurses came by to ask if she could have my blog address to give to another Dr. Yakes patients that was in a room down the hall!  Of course - always nice to hear from a fellow avm-er!  I went down to the nurses station later and asked about the patient, hoping to meet her, but she had company @ the moment.  We left the following day, so I never did get to meet this patient!  I will always be grateful for all Shalon has done for me regarding having an avm and relating to someone pretty much in the same situation!
The weather was decent - no snow during the time we were there!  I think Celia said the lowest it got might have been in the 50's.  I was pretty much stuck indoors @ Swedish the entire trip!  We did get a chance to hit Wally World, so Celia treated me to some cute jammies and a nice jacket!  Got a t-shirt from the space store @ the Houston Airport as well!  We enjoy talking books - her with her I-pad and me with my Nook!  These trips help us catch up - we're all so busy during the week but we always do make time to touch base w/one another @ least once a day by texting or calling each other!
All in all it turned out to be a pleasant enough trip.  I tell everyone @ Swedish that I tell people here how much they make their patients feel well cared for!  Had fun talking to one of Dr. Yakes fairly new patient coordinators - JoAnn!  She's got us hooked on drinking some Chi Tea from the coffee shop downstairs!  I believe Becky is the other patient coordiator and she was telling us what she likes ordering @ Starbucks, so we got some good tips!  Andie was the P.A. we dealt with most this trip - did see Mandi as well, but didn't get a chance to see Kelly!
For the most part, I have been able to deal with having to go through this medical crisis, and sometimes I even forget about it until someone stares, I feel rotten or I have a bleed! I know there is no way Mark and I could get through this without our faith, love, prayer and support of our families!  It's great to be home after Mark had been gone 4 days to OH.  Then I was in the hospital a couple of days here, then Celia and I left for Denver!  Hanz and Bella are probably wondering what's going on w/their folks coming and going all the time! I know when Mark was gone, they missed him terribly!

My sister Celia and husband Greg go above and beyond in helping us through this difficult time!  From expenses to emotional support and lots of prayer!  Marks brother Jim and his wife Shelley in Rockport give us so much support as well!  They are both there for us if we need anything and never hesitate to let us know how much they care!  If I didn't have all that, I would be a lot worse off!  My darling husband is amazing - he often has to clean the bloody mess my avm bleeds leave behind since I can't bend down to do it myself!  Mark knows exactly how to make my favorite comfort food, so even if I can't always eat what I want, @ least what I do get to eat is delicious!  Mark puts in a full day of work - (sometimes working out in the hot, humid, Texas heat and that can really drain you)!  He'll rest a bit and then make sure I'm well taken care of.  Makes our dinner, takes care of the dogs if they need bathing, grooming, feeding - plus he picks up the chores I can no longer do depending on how I'm feeling!  All I really do around here is the wash and that's not much, but all I can handle @ the moment!
Here are some photos of our trip - Fall in Denver, leaves changing colors, something we don't see down here!  Being transported to OR talking to Mark and then waiting in OR to be set up for procedure.  The bulletin board on the 7th floor feature my peeps that take care of me while I'm thier patient!  Then of course, that's me in front of the hospital sign - my home away from home!
So onward we go ... hoping and praying for mininmal bleeds until all of this is behind me one day!  Thank you for coming on this journey with me!  Every single one of you matter and are a part of my recovery from what we are going through right now!

Mom always slips us some money to help w/expenses on these trips and I know she does a lot of praying!  Her husband Vicente just celebrated 81 years @ the end of October and he is extremely supportive of what we're going through and makes sure mom is there for me!

Love to all!  Mark & Cyndi Schuman

Feel free to write w/any questions any time! 

dulce@grandecom.net

schumancynthia@gmail.com

Latest fun - yeah right!

Well hi everybody!  How are you?  I sure hope better than I am, because I'm not @ my best right now.  I had been doing sooo well for a couple of weeks!  I was so happy, had gotten rid of the pseudomonous infection, feeling good, work was great ... so I was feeling ok about Mark going out of town for a few days to enjoy the celebration of his parents Doris and George's 60th Anniversary party!  I would have loved to have gone, but there is just no way in the physical condition I'm in right now.  Very high maintenance and I would have hated to have a bleeding incident in the middle of it all.  Besides, it would have really tired me out too!  This way, Mark could enjoy himself w/out having to worry about me.  Can I just add that I really like the dress my mother-in-law Doris is wearing in the photo!  She has excellent taste, her make-up and hair always immaculate - very stylish!  Of course I can see how Mark will keep getting more handsome with age, since he looks so much like his dad George!
Mark was due home Monday night of last week, and I woke up @ 6:00 a.m. that morning feeling wetness on my chest.  Sure enough, blood!  I got up quickly to go to the bathroom and spit out several large blood clots.  GROSS!  Picked Mark up @ the airport that evening - glad he was able to get home, as his take off flight was delayed a couple of hours due to thunderstorms in the area!  Since I don't cook, I had been dying for Mark to get home so I could have some delicious meals again - wouldn't you know it though - soon as we were about to have dinner Tues. night I had a bleed.  Called out to Mark to come help, so his dinner had to wait.  Of course there was no way I could eat either!  Got it stopped finally after packing my mouth with gauze for a while and both of us fell asleep in front of the tv.  Woke up about 1:45 a.m. and told Mark I was going to remove the packing in my mouth.  It was ok - but of course I had to pull @ the blood clots (gag!) toward the back of the left side of my mouth and the blood just started shooting out again!  It was lasting a while and I was going through lots of gauze and running out, so I knew I'd better get to the emergency room!  By this time it's almost 3:00 a.m. Luckily we live a few blocks from the hospital - so I grabbed a plastic bucket, some paper towels and headed out!  Mark waited w/me in ER a couple of hours then decided to go home and rest.  It wasn't until about 7:30 a.m. that I was finally admitted and put in a room, and my sister Celia showed up right then and stayed w/me most of the day!  Mom came by as well - and Mark brought me a few things I needed later.  I needed 3 units of blood to get my level up, so I stayed overnight.  I always miss my kiddos so much and Mark had just gotten home too!  Darn it!
Course I was on a liquid diet, then soft diet.  I'm still starving from Mark being out of town and then this happens!  Course I'm afraid to eat and cause any more bleeding!  My "meals" were juice and cream of wheat.  Was released the next day - Mom picked me up and took me to get a decent meal @ Town and Country restaurant.  Didn't eat much and she drove me home, knowing Mark would be home in about an hour from work!  I was so happy to see my kiddos Hanz and Bella!
Went to work the next day - can't just stay home alone in case I had another bleed, and @ least going to work keeps my mind occupied and am surrounded by people than can help if I have any problems!
Took the kids to Petco and Petsmart Saturday, but that tired me out, so we came home after that.  I had wanted to take them to a local Halloween event for pets, but there was just no way I could be out any more.

I feel so lost - I don't even know who I am sometimes.  I can't just live in fear of another bleed, but how can I not after the terrible experience I just had?!  It always takes a few days after having a bleed to feel I can relax a bit.  So far, I haven't gotten there yet.  I've been experiencing anxiety, hard time sleeping and afraid to eat anything but very soft food!  I often wonder how much more I can take of this!  If it weren't for the phenomenal group of people that surround me, I could not make it!  My husband is incredible, I have the 2 cutest dogs in the world that love me, my family is awesome and always there for me and I have the best friends ever that pray for me and accept me as I am!  My co-workers are always looking out for my best interest, telling me to take it easy, opening doors, offering a chair for me to sit and get comfortable ... I feel very blessed in that regard!  I can't deny though that when I have a bleed, it totally messes with my head and I feel like this nightmare will never end!  The only thing keeping me sane, is knowing that 2 fellow avm-ers (I know I've mentioned this before) have completed their procedures.  I just want to be a woman in love, enjoying her husband and enjoying Mark-a-ritas and eating anything I want!  For the most part, as long as I'm not bleeding or in pain - I can deal with my avm issues - it's having a bleed that throws me off!  Mom wants me to keep going to church, but in order to "function" I need to take a pain killer and a steroid to get going.  Well, the pain killer makes me drowsy, so last Sunday, Mark had to nudge me like 4 times during Mass because I started snoring!

  
I got a nice surprise from one of my "besties" like Amy Farrah Fowler says on Big Bang Theory!  My bud Felice that lives in Dallas sent me a book in the mail (More letters from Pemberly) that I can take w/me to read in CO!  Plus, she even included a gift card for Petsmart for our kiddos Hanz and Bella!  WOW!  I have such sweet friends that always think of me and keep me in their prayers and surprise me with things to get my mind off this horrible avm!

I'd better get packing - our flight leaves in 8 hours, which means I have to leave the house @ 4 a.m. and have Mark take me where Celia will pick me up and we'll head out to the airport so we can get there by 5:00 a.m! 

I'll try and put in some photos later!  Thanks always for all your love and support!!!!

Cyndi
dulce@grandecom.net
schumancynthia@gmail.com

P.S.  Thought you might like to see a few photos from my in-laws Doris and George Schuman's 60th wedding anniversary!  Thought Mark looked very handsome in this photo too!  Then of course the photo featuring the family!

Late Sept. Embo

Hi Everyone!  We're home again!  Sorry it's taken me a bit to write, but I needed to get my bearings after the trip, dealt w/a little bleeding and wanted to spend time w/Hanzarella before I sit a while @ the computer!  Mark and I had a pretty uneventful trip - started with Mom showing up an hour early to take us to the airport!
Luckily the flight from Corpus to Houston is short, because the old guy in front of me leaned his seat back - we barely have room as it is!  Guess he was all comfy cozy, so he ordered a beer!  It's barely 10 am sir!
There were two lovely ladies to my right named Diane and Ruth on the stretch between Houston/CO!  They are sisters and their husbands were horseback riding on a dude ranch in CO!  I had to say, "like in City Slickers"? I believe Diane said something about thier husbands were sending a limo for them to the hotel to take them out to the ranch - cool!  We "talked dog" since Ruth's daughter has a couple Jack Russells!  They asked about my Nook and they really helped make my flight more enjoyable.  Usually that last hour on the plane has me figety with anxiety and claustrophobia!

Soon as we landed - headed to my ENT appt. with Dr. Andre Reed - head of Voice and Swallow in CO.  I had not see him in years - but every third visit I see an ENT to check my airways before an embolization is done by Dr. Yakes!  It was great seeing him - he's lost some weight!

Went to dinner @ Mimi's Cafe in the Lone Tree area and then to a petstore to enjoy some pups! Finally headed to Swedish where Mark dropped me off in the lobby w/all our luggage as he parked the car.  Right away I see one of my favorite nurses wheeling out a patient.  Rick Smith is the best post op nurse I've ever had - he thought I was on my way out, but I assured him we had just arrived!  Checked in @ the 7th floor nurses station to be greeted by lots of friendly faces, smiles and hugs!  Jill (my Twilight buddy) was there, Dave Labadie (original dream team from first embolization) and Alex, one of the new techs (a/k/a Taylor Lautner)!  During my stay I enjoyed being taken care of by more of my faves, Judi, Laura and Burgess!  Didn't get to sleep until 4:30 a.m., but I would be the last one going in to OR the next day, so no problem!
Lately, since I have been checking in the day before the embolization, I was under the impression that I no longer went to post op.  Wrong!  Apparently, I just wasn't waking up until I was in my room - except for this time.  I woke up and guess I was feeling like I wasn't getting enough oxygen, so my instinct was to sit up from the flat position I was laying in so I could breathe better!  Well, more often than not, Dr. Yakes does an arteriogram and that means a groin stick and I have to lay flat several hours afterwards otherwise I'll bleed all over the place from that stick!  Course as I'm coming out of the anesthesia and all, so I'm just going with my instinct - but I remember the anesthesiologist Wendy and another nurse trying to tackle me back down to a flat position!  I started praying Hail Mary's to calm myself down and knew I needed to relax as hard as that was!  Aaak!

In case you didn't recognize Mark a few photos up, that's him still in the operarating room with me right before the embolization!  Dr. Yakes unded up using 31 coils and 10 cc's of alcohol to stabalize or neutralize the arteries!  Dr. Yakes P.A., Kelly tells us the coils are in deep - I had coils a few years ago that ended up being exposed as the wound was healing and had some bad bleeding issues.  I keep holding on to the thought that all of this will be over one day - this is where a lot of your prayer comes in - please give me the strength to endure what is in store for me/us! My hospital stay worked out well - since I didn't have much of an appetite, I'd have Mark order what he wanted for meals, as long as I had some cream of wheat!  Mark takes such great care of me - well, everyone does really!  I tell people that I am sooo blessed to be surrounded by so many angels that help throughout my day.  Everyone @ work is awesome and always helping in anyway possible!  Always asking if they can help w/any task I'm doing or opening doors for me as I come through with what Mark calls my "what if" cart!  I drag that hobby cart w/me to work and back every day and get asked alot what's in it.  In case you don't already know .... it is soooo uncomfortable to "be me" that I bring whatever I can with me to make my day more enjoyable!  From my meds, to snacks, my Nook, an extra cd.  I have a couple new job duties that are working well.  Since some of us @ work are having some free down time, I now sort the mail in a very nice mailroom!  I get a good cd, something to drink and am able to go at my own pace and get my work done!  Sorting through faxes, UA results and placing them in the right boxes for officers or departments!  I also sort through offense reports in a file cabinet that an officer might need to complete a report and get that put in their mailbox.  By the time that's done, I usually have a pile of files waiting for me on my desk that need to be taken care of!

Back to Swedish, after the embolization, it's pretty much just "hurry up and wait" until I am released.  After showering I walked down to the gift shop and saw a cute stuffed toy that reminded me of Hanz I just had to have! My last night @ Swedish reminded me of when I got my trache - @ that time I was doing the same thing, talking and gesturing in my sleep!  I am given steroids for the swelling after an embolization and that makes me warm.  The little pockets under my tongue were swollen, so I couldn't even drink from a straw!  I turned toward the right of my bed, since @ home I have a little fan on my nightstand - of course it wasn't there, because I was @ Swedish!  I remember looking in the opposite direction hoping to see Mark since he would be to my left in our home bedroom, but he wasn't there.  All this time you have to realize I'm medicated and more alseep than awake!  I even patted the mattress a few times and called out to Hanz to jump up and be with me!  I sure miss our kiddos while we are in CO!

We left Swedish Saturday morning by 8:00 a.m., returned the car rental and headed to the airport!  Got home and Mom and Vicente were already there to pick us up!  I stepped outside w/the Morins as Mark waited for our luggage and look what I saw! It was too good a photo op to pass up! I thought these guys were dressed up to pick up a kid, but no - it was Captain America that greeted his girlfriend with a kiss!
So happy to get home to our babies!  Our neighbor Shauna takes really great care of them while we are in CO!  Rested all day Sunday and back to work on Monday!  Mark had called that he would be working late, so I was home alone when I had a bleed that afternoon - darn!  Ugh!  That was bound to happen.
Got some very discouraging news from fellow AVM-er Shalon on Facebook!  I don't know the detaiils right now, but I do know that she has already been given the "we are done" twice, and had to have a little more embolization after a 6 month MRI follow up - but she just expereinced a massive bleed!  Oh no!  I was hoping the closer we got toward the end of the treatments, the lesser chance of bleeding!  Apparently it's just not going to completely stop bleeding untill the avm is entirely shut down! :(  Well, on the bright side - my pseudomonous infection IS done and I'll be back in CO with Celia @ the end of the month!
Thank you everyone for keeping up with us!  Enough drama!  Talk to you soon!
Love,
Mark, Cyndi, Hanz and Bella!

I always hear people saying they can't leave a comment on my blog: you can always write to me @ schumancynthia@gmail.com or dulce@grandecom.net  I would love hearing from anyone that has any questions about anything I'm going through - thanks!  Have a blessed day!

Late Sept. 2012

Hi Everyone!  How are you?  I've been doing well, considering the circumstances!  For me, as long as there is no spontaneous bleeding, I'm good!  Haven't had much of an appetite lately - probably all the meds I'm always on messes w/my stomach.  Poor Mark is always trying to prepare me something good to eat!
This will be a quick entry, as I want to spend as much time as I can with our furry kids before we leave on another trip to CO!  I always look forward to going, as I know I'm in the best care possible @ Swedish!  Plus, I love everyone up there - they are so awesome!  That is so important for a patient to feel safe, comfortable and well cared for!  It gives Mark a little bit of a break from having to take care of me all the time too!  I just found out last visit that Swedish has free WiFi - yay!
Shalon was recently in CO - she went for her 6 month check up and needed a little more embolization - the she'll return in another 6 months for another MRI to see if she is finally AVM free!

Our babies just celebrated a birthday!  Prince Hanz is now 4 and Princess Bella is 2!  For dinner, they got one of those Ceasars Gourmet Dinners in Filet mignon (the ones w/the white Westie on it)!  They are so funny and we love them so much!  Last time we took them to Petsmart, a little girl kept telling her dad, "I want to pet the blonde one"!  Hanz is always good about performing his tricks - dancing on his hind legs, sitting, laying down and giving Mark a left handed high five!  Bella used to lick everyone, but lately she's been acting shy around people!  Too cute!  Big sister Midori helped celebrate the occasion too w/her own party hat!
Recently, Celia took time out from her busy schedule to clean my teeth!  Most of you know she is a dental hygenist and her husband Greg a dentist!  My teeth are suffering as I go through my avm treatments - not too badly though.  I'll deal with it.

Oh!  I just finished reading a free nook book called All Roads lead to Austen - a Yearlong Journey with Jane by Amy Elizabeth Smith.  I remember seeing it @ the Safeway in CO and wanting to get it.  There were 2 free friday books this past week - one being Reader and Educator Guide to The Hobbit and Lord of the Rings.  I'm only on Chapter 2 of The Hobbit - I'm taking it w/me to CO so I cn read it this time!
If you ever have a chance, check out the Brussels Griffon Fan Page on Facebook - one of the breeders Brussels just had puppies!  So precious! Oh, that is Bella taking a nap!
Thank you all for your love, prayer and support.  The journey continues ...
Much love to all of you!

Cyndi, Mark, Hanz and Bella!

Hi again!

Hi everyone! How are you? I've been doing really great this past week! No bleeds - yay! Well, my place of employment changed insurances and it totally discobumerated some of my medical stuff! According to the insurance and our HR person @ work - nothing had changed, the benefits were all the same, but there was still some changes that had to be made. Had to say goodbye to Nurses on Wheels and find a new home health place! Really didn't want to see them go, Alma, Carlie, Melissa and Robert all took very good care of me! Alma came by to remove the needle in my mediport as that was always done every friday. My insurance e-mailed me the names of all the home health places in the network and I started with the one that had the name of Christ in it! I called Christus Spohn home health and spoke with a lady named Karen that was able to help me right away! I faxed her my insurance cards and before I knew it - I received a call from Debbie, one of their RN's! See photo of Debbie and I. She came by our home to put in a new needle in my mediport and access it so that Mark can give me the IV antibiotics! Unfortunately I'll have to do my own IV during my work day - I tend to be a little dingy and not retain information, so I'll have to write the instructions down step by step to make sure I'm doing it correctly! Debbie even brought an extension for my mediport so that would make it easier for me to handle! Well, just wanted to fill you in on the latest. Got a nice e-mail from a lady that has a 3 year old son w/an avm - she has been following my blog since January. I'm happy people out there are getting some information and I love hearing from anyone wanting to write! Actually, I thought there was room for a comment @ the end of each blog entry - but in case there is a problem I can be reached @ either: schumancynthia@gmail.com and I can access that from my phone or home computer. Or @ dulce@grandecom.net and I can only access that from my home computer. Here is another photo of Hanz and I - had just gotten home from work and he likes to come sit on my lap! Thanks everyone! I'm really excited about meeting Debbie - she is right around our age and very nice! Take care!

Cyndi

Ok, I'm also including a photo from the Brussels Griffon fan page of Mickey that belongs to Terry Rowe Amore. She looks a lot like our Bella! Also came across this photo of Mark, Mom and Hanz shortly after we had first gotten Hanz! Hanz turns 4 this month and Bella will be 2!

September

Hello! How is everyone? I hope you are enjoying this long weekend we are having! I am soooo grateful to have this extra day - to recover from what has not been too great so far, darn! Yeah, I didn't want you to think I'm over here having any fun. Sigh. I feel like I'm a prisoner in my own home. Started having bleeding issues again. Missed this past Thursday @ work due to that. Then started bleeding as I began to eat my dinner Friday night. So that had to be put on hold a couple of hours - I ate it cold later, I didn't care, I was hungry! Being on steroids after an embolization increases my appetite! Was hacking a bit Saturday in the early hours of the morning and that started a bleed. UGH! I had really wanted to try and go to Mass, and be able to visit w/one of my sister's friends that is in town! Last time I saw her was @ our wedding! Whenever I have a bleed, I just feel I can't go anywhere, so I can be near a sink and the supplies I need to pack my mouth and try to stop it!

I spent Sunday sitting on the couch reading or watching TV. Didn't even eat/drink anything until about 3pm for fear of bleeding. Had some clear Ensure then and later, Mark made me some scrambled eggs. Dinner was mashed potatos and broccoli and cheese! So delicious! Then, I'm afraid to brush my teeth and start a bleed, as that has happened before, so I am anxious about that! It is now Monday morning and am soooo happy for the luxury of being able to brush my teeth w/no problems! Wow! It's the little things .... You know, this avm reminds me of a dragon wanting to come out of a cave - it attacks then goes back into the cave to wait until the next time the victim is unsuspecting. Yes, I need to read The Hobbit!! Mom had been wanting to take us to dinner to give Chef Mark a break in the kitchen, and we finally hooked up for breakfast Sat. morning! We took the kiddos to the Vet. for a quick check up and then met her @ Cracker Barrel! I'm telling you this because as I eat, I have to set up a mirror where I can keep an eye on whether I see any blood trickling down my chin. I'm lucky I get a trickle, sometimes the bleeds in the early hours of the morning come quicker as my mouth spontaneously fills up with blood and I run to the bathroom sink to spit out clots! UGH!!!! To give you an idea of how the steroids increase my appetite, I had: 2 scrambled eggs, hash browns, 2 small bowls of grits, a pancake and 2 pieces of cornbread w/apple butter!

The weekend hasn't been all a disaster - yet! I'm hoping I might still get to see Celia's friend Liz today! I had hoped we could take the kiddos to Petsmart as there are sales going on and it's an outing for them and I really need to get to Wal-Greens and pick up more meds and gauze to pack my mouth when it bleeds! I didn't even want to do that yesterday!

On the bright side, I got on my Nook website and downloaded 21 free books! Yay! I love to read! Mom, Celia, Davis and I are all big readers! Greg likes audio books! I had been telling mom how I want to go back and read some of the classics, like "Grapes of Wrath" or "Wuthering Heights". Mom was @ Half Price Books the other day taking a bunch of her old books and picked up "The Grapes of Wrath" and is really enjoying it! I just love how some authors are so descriptive, you feel you are there or you are that character! I am Bella Swan Cullen! Ha, ha, ha! No, I'm not losing my mind (although the avm has me right on the edge @ times - the P.A.'s in Colorado swear they haven't sent anyone to the mental ward that is going through embolizations!), just wanted you to know my sense of humor is still in tact! As always, Nurse Mark is infusing my IV antibiotics 3 times a day over the weekend, as we keep fighting this pseudomonous infection! Oh! Great news - my brother-in-law Jim told Mark about a full size bed someone in his church had, so we're all finally sleeping in one room again! Yay! The kids are so happy! Thanks Jim! I had hoped to be able to visit w/Jim and Shelley over the weekend too - we'll see what this avm has in mind for me!

Bella hesitated to jump from my twin size hospital bed (I need to sleep propped up because of the avm) and Marks full size bed - Hanz mastered it right away! You would think they'd sleep where they had more room - nope! Woke up w/both furry kids with me on my bed! I love my babies - they are great therapy to get us through these rough times! The Olympic dog cartoon is Hanz - our nephew Mark calls him "little seizures" (instead of Little Ceasar's) because whenever we have anyone over, Hanz continuously wags his butt!!!

As always - we thank you for keeping up with us!

Love,

Mark, Cyndi, Hanz and Bella!

P.S. I added a cartoon and a photo of my favorite show The Big Bang Theory! Those guys are hilarious! Course I shouldn't just say guys, "Penny, Bernadette and Amy Farrah Fowler" are pretty funny too! Did you know that the actress that plays Bernadette doesn't actually speak in that pitch? It's weird to hear her in a "normal" voice! Also the guys that play Sheldon and Howard are each accomplished pianists and the actor that plays Raj married like the Miss Universe of his country not too long ago! "That's right, that's how we roll in the Shire" - Leonard dressed as Frodo!

I'd better go see what the kids are getting into! I may watch New Moon, as I just watched Twilight last weekend! Oh, and I am currently reading Pets in a Pickle on my nook!