January 2013 Embolization

Hi!  How is everyone?  I've been wanting to blog for the longest time, but just haven't felt up for it and have been having complications recovering lately.  This trip I was accompanied by my husband Mark - he is so amazing, can't imagine going through any of this without him.  He takes such wonderful care of me - cooks fantastic comfort food and does everything around the house since I'm unable to do much in my situation!  As much as I want to clean or get things done, when I'm having bleeds - all I can do is sit on the couch and wait it out!

As we arrived in CO, I just wanted to go straight to Swedish and get admitted - I was feeling weak and let Mark get me in a wheelchair as soon as we walked in the hospital!  Let me say that what I'll be writing, isn't me "complaining", but trying to inform maybe a fellow avm-er or family member what I go through or what to  expect.  I would have liked to be given the heads up on lots of things and I've sure learned alot through experience!  Whenever I get home from an embolization, a registered nurse from my primary insurance calls - and a few nights ago I spoke to a new nurse, so I had to go over all the fun I'm having!  She seemed impressed with everything I do in order to stay on track, but I assured her it is a team effort to help me function!  I was telling her about the vitamins I take (iron, potassium, calcium), plus the clear Ensure to supplement my diet, as I can't always eat when I'm actively bleeding! Every once in a while I also have some Pedalite - like when I was on a very strong IV antibiotic that upset my digestive system.

Back to the CO trip - we head right up to Dr. Yakes office on the 4th floor and are greeted by patient coordinators JoAnn and Becky!  Got put in P.A. Kelly's office right away to start the admitting process.  A few minutes later, JoAnn walks in with some Chi Tea for us from the Cafe downstairs!  Yummy!  What a doll!  It really hit the spot and it made me feel sooo good! Got put in a room right away and got settled in for the night!

I guess because my levels were so low is the reason I was so weak.  Turns out my blood level and potassium level were low.  I felt like my head was not attatched to my body.  I couldn't put things together and Mark had to keep "filling in the blanks" of conversations I had - just couldn't remember things.  I remember nothing of The People's Choice Awards show - darn!

Was given potassium and a blood transfusion through IV to get me ready for having the embolization the next day.  I barely remember being taken to surgery and it seems as soon as I lay down on the surgical bed I am OUT in a few seconds!  Next thing I know, I'm waking up back in my hospital room.  Here's what I heard happened.  Apparently, Dr. Yakes had gotten up to using 16 cc's of alcohol and realized it was affecting my heart, so he stopped @ that point. He worked on my left inner ear area, so all that is black and scabbed over - ugh!  Mark hadn't seen it until this weekend - I tell him sometimes I just don't want to burden him w/every single thing I'm going through, but it is a LOT!  It's a wonder I don't lose my mind between the bleeding, infection, scabbing and ear drainage.
I hear I was woken up too early from anesthesia - apparently I was irate and was put back to sleep longer.  I have no recollection of any of this.  I had to wear a heart monitor overnight, so I had lots of wires attached to me!  Not sure what is going on w/this blog site - I'm trying to post photos, but it isn't letting me.  Sorry!  I'll keep trying!

Anyway, I got to see some of my favorite nurses - Dave Labadie - the original member of my "dream team" that took care of me the first time ever @ Swedish!  Here he is w/another of my favorite nurses - Elizabeth!  My "twilight buddy" Jill is moving to ICU - sad for me, but advantageous for their department!  I need to make her a copy of my Breaking Dawn Part 1 Soundtrack from the Twilight Saga!  She made me a copy of Twilight's New Moon soundtrack when she knew I didn't have it!

The day I got dismissed from Swedish, Mark and I headed to Sam's Diner (featured in the show, "Diners, Drive-ins and Dives") for breakfast!  Got a photo of us outside as we were leaving because we were getting snowed on!  We then headed to Barnes & Noble - I was looking for a particular book I couldn't find in Corpus Christi, and of course Colorado's B&N will carry more cross stitch magazines than our location will!

Got the car rental returned, headed to the airport and on home!  I've been having some bleeds from my inside my mouth all weekend - so I've spent it all with my mouth packed in gauze!  It just started bleeding spontaneously Friday night and I wasn't able to have anything to eat until about 10:00 p.m. Saturday night!  By then I had tried to remove the packing several times, but kept starting to bleed.  Once I had only one gauze in my mouth, I was able to "eat around it", so that is a relief!

I've still been fighting a pseudomonous and staph infection, so that has been making the left side of my jawline itchy and uncomfortable.  Dr. Boynton advised me to stay on the oral Bactrim, but I feel it isn't helping.  At this point, I'm just happy to not be actively bleeding. 

Originally, we had hoped to take Hanz and Bella to Petsmart for their outing, but I just wasn't up for it w/the bleeds I've been having.  I hope to have a decent day tomorrow - Mom will pick me up so I won't spend the day alone in case of a bleed.  Mark has to work, but I have the day off.  He has been cooking up a storm - so awesome!  Made some salmon w/honey breaded topping the other day, along w/some acorn squash and safron rice!  Had some italian cream cake from scratch for dessert!  Right now food is very important to me - when I'm on steroids after an embolization, my appetite really increases!  There are times though that I may be on an IV antibiotic that wipes my appetite away, and I will go the whole day w/nothing to eat but a baked potato or some broccoli w/cheese.

So, if Dr. Boynton's office is open tomorrow, I may call him to order some lab work and get a blood count on me since I've had bleeds all weekend.  I may beg for some other kind of medicine to get rid of this ridiculous infection - the oral antibiotic is just not working and I don't need that distraction and discomfort on top of the bleeds!  I haven't even seen anyone in my family since I've been back!  I haven't felt well enough to go out to see them, although we talk or text several times a day.  I'll probably see both Mom and Celia tomorrow.  Celia will be going w/me on this next trip right around Valentines day!
I'm going to publish this and try and insert photos later.  This blog has a new format that I can't figure out right now on how to insert a photo like I used to!  Take Care!

I told Kelly she looks like one of the actresses on the show Criminal Minds!

See all my wires from the heart monitor?  I was wearing my own jammies!

Dave Labadie and Elizabeth - both excellent and fun!

Jill is my Twilight buddy!  Super sweet and beautiful!

Here's what I look like right after the procedure!

 

 

P.S.  Ok, I figured out how to insert photos - had to listen to a tutorial on the new format for the blog.  Anyway - you know how I always say it takes a "team effort" for me to function - well, Mark's birthday was saved by my sister Celia & husband Greg!  They know I'm not able to plan anything for Mark the way I'm feeling, so Celia surprised us with cooking a goose for dinner!  She also had some german chocolate cake that you'll see Mark cutting with the "saw knife" our friend Dorinda got him!

Oh, let me back up a bit and mention the photo of us on our 20th Anniversary @ the Macaronni Grill!  It was a nice evening, then we came home and took photos for our anniversary album!  It just doesn't feel like we've been married 20 years - where does the time go?

Christmas day we got to spend some time with Mark's brother Jim and his wife Shelley!  Here is Shelley playing the mandolin and singing along with her brother Chris!  They had friends from church and neighbors over, along with good food, so we had a great time!

 

Here's some exciting news - my beautiful sister-in-law Diane is getting married next month!  We are so happy for her!

 

Would you believe I still haven't been able to get those darned infections under control?  My PCP did order an IV antibiotic, but I felt it wasn't working.  He then ordered a different IV antibiotic that I started having an allergic reaction to!  By this time, it was too late to try and get another antibiotic called in, so I've been taking the oral antibiotic Bactrim that the doctor had originally started me on.  I figured that was better than not taking anything!  I have an appt. w/Dr. Boynton in the morning so we can talk about getting me on a different IV antibiotic!  Meanwhile, a nurse from Christus Spohn  Home Health Care had come by my office earlier in the week to access my mediport. Then on Friday, she drew blood from the mediport to be taken to a lab to check whether the IV antibiotic was affecting my kidneys!

 

A few days ago I accidentally scratched a small bump on the left side of my face.  Course blood came out all over the place.  It seemed to take forever to get that stopped - but I see that little bump again.  I have to be sooo careful when I wash my face that I don't scratch that area!  I wash with one of those face wipes that you wet and foam up, then "rinse" with a small clean hand towel.  Unfortunately, the way my lip is messed up right now, I tend to drool and some of that cakes up on my chin. Some of my nerves are damaged, so I can't always feel when I'm bleeding or drooling! I know, sounds gross, but that is the reality of my situation.  I woke up @ 4am thinking I was bleeding, but it was just drool coming out the right side of my mouth.  Ugh!  I'm afraid to brush my teeth because that may cause a bleed.  There's no way around that though - all I can do is hope that the avm has "retreated" to where I won't bleed easily when I brush!  I rinse with some Biotene Oral  too, as I can't open my mouth very wide due to the avm to brush properly. I have "cuts" on the inside of my left cheek from probably biting down when it's swollen - in any case, because of this, I can't rinse w/anything stronger because it stings!

 

I still have people asking, "So, is the doctor in CO really helping you"?  YES!!!  It's very hard for Dr. Yakes to give me a "time line" on how much longer I have treatments because each time he works on a different area and a lot of things depend on how I heal!  As I mentioned earlier,

Dr. Yakes had used 16 cc's of alcohol this past procedure and apparently it started affecting my heart, so he stopped.  There's been time's he's used ALOT of alcohol and I'll develop a wound that takes a while to heal - so my progress depends on many things!  I have coils in there from the time before to help stabalize the area.  Dr. Yakes reminds me how far we've come and how much work he has done on me!  He always comes to talk to me before I'm put under.  He has such a wonderful bedside manner - he makes you feel comfortable and that you are in capable hands!

 

This past week I was working @ my desk and started bleeding spontaneously.  Blood just started coming down my chin.  I grabbed a box of gauze from my desk and headed to the ladies room.  Luckily it only took some rinsing of my mouth and packing it with gauze to get the bleeding under control.  Course I got blood all over my polo shirt, but I had an extra one @ work to change into!  I continued working, but had been taking Benadryl for the itching and burning from the infection - well that made me drowsy and  I was falling asleep.  My supervisor walked by and asked it I was ok.  She saw that I had my mouth packed with gauze and said I could go home if I needed to.  Well, I was planning on sticking it out and staying @ work, so I started eating lunch @ my desk an hour or so later - and I started bleeding again from inside my mouth.  Packed my mouth again and sent my supervisor an e-mail telling her I was leaving for the day. 

 

Luckily, I've had a decent weekend with no active bleeding!!!  That doesn't mean I'm not "anticipating" another bleed and find myself tensed up where I have to concentrate on just relaxing and letting go of that fear!

 

Well, I guess I've tortured you enough with what I go through with this avm.  Still haven't seen The Hobbit.  This whole year I saw one movie - the Breaking Dawn Part 2!  I'd better get to bed.  Last night I fell asleep on the couch a bit, got up @ 2am to go to bed.  Woke up @ 4am and watched a tv show, then woke up again @  6:30 a.m.  Catch up with you soon!

 

Cyndi

 

As always, I welcome any questions and comments and can be reached @:

dulce@grandecom.net or schumancynthia@gmail.com  Thanks so much for all your love, prayer and support!  I miss my friends - just can't function well enough these days to be a good friend or get together w/anyone!

Ok, I'm adding more photos just for fun!

Here I am about to leave for work with my "what if" bag as Mark calls it!  What if I need this, or what if I need that?  It has medical supplies, books, magazines, snacks - anything that will make me more comfortable!

Here's Mom and Vicente laughing about something being said - during Christmas time!

Hanz, Mark and Bella!

My nephew Mark texted this photo to me the other day!  Reminded me of our Hanz!

My Mommy's home, My Mommy's home!  Bella greeting me as I get home from work!

Playing Farkle @ Mom's!

Dr. Yakes and anesthesiologist Dr. Quinn visiting w/me before I go under!

I thought this was cute!

 

 

Christmas 2012 Blog

Merry Christmas Everyone!  How are you?  We're doing ok.  Unfortunately, lately, we've been under the weather, but we might be on the upswing!
First let me start by saying that Mark and I celebrated 20 years of marriage on the 19th of December!  It does not feel like 20 years, it feels like only a few!  We waited 16 years to "have children" and Hanz is 4 and Bella is 2!

The day after Celia and I got back from my last procedure, I was pumped on so many steroids (although still very swollen) when Mark and I took the kiddos to Petsmart to get a photo with Santa Claus!  It's become a tradition every year - the first year Hanz was in the photo alone because Bella hadn't been born yet!  It's cute to look back @ Bella's first Santa photo, when she used to let me put bows in her hair!  Now she'll just shake them off!  Actually, Mark took this photo and we liked it better than the one we got from Petsmart!

Several days ago I had told Mark that I had been gritting my teeth alot and my jaw line on the left was starting to hurt!  I kept having to make the effort to not do that - I think the steroids I was on for the swelling after an embolization were catching up with me!  I tend to not go to bed until 2:00 a.m. and wake up @ 4:00 a.m., then get up to get ready for work @ 6:25 a.m.  I was tense, exhausted and had a major headache Thursday afternoon.  I kept wanting to tough it out and stay @ work, but my headache got so bad, I felt like throwing up!  I sent my supervisor an e-mail that I was leaving and ran into her @ the front desk on my way out.  I had already started heading to the car when I realized I hadn't clocked out, so had to go back in again!  I told my supervisor that I hoped to see her the following day.  Well, unfortunately later that night, I did throw up and ended up spending the night where I fell asleep on the couch!  When I woke up, I asked Mark if he was going to go to bed or stay on the couch - and he pointed out that it was already 6:30 in the morning!  Yikes!  I felt horrible, I knew there was no way I could make it to work.  To boot - we had people coming over to install a new heater/airconditioner unit, so Mark knew I couldn't stay home. It was a little cold out and Mark knew the workmen would be in and out of the house all day!  Called Mom and she came to get me so I could rest @ her house!  She and Vicente both had a chiropractor appt., so I just sat in a big comfy chair in their living room with my feet up and dozed off a while!  Mark had been massaging my neck before I left, so I was starting to feel a little better, once I did some more stretching and resting!  Took an antibiotic, a steroid and a Lortab!  When I called my supervisor to tell her I wasn't coming in, she said I sounded terrible!  Then I completely forgot I had a wound care appt. that morning and didn't call them until about 11:00 a.m. to explain what happened!  They know that when I miss an appt., it's because something major happened like I had a bleed or got sick, or was in the hospital!  Last year I admitted myself to the hospital Christmas Eve night because I was feeling lousy!  Turns out my blood count was low and I was dehydrated.  Mark kept thinking I was going to have to be hospitalized again for IV antibiotics and I thought I had another pseudomonous infection because of the pain I was feeling!  I started feeling better mid-morning, so I'm thinking it was exhaustion and tension combined giving me such a horrible headache!  I know my sister Celia suffers from migrains and understands how painful they can be!
Mark started feeling under the weather as well, so he went to bed early!  Actually, he's been in bed most of the day!  He is all sinusy and congested, so he's been taking Musinex and Robutussin cough syrup.
I'm very surprised that I was able to get some Christmas cards out this year!  Last year I was too sick to be out shopping @ all, much less sending out cards!  This year I managed to do a little more, but we're still waiting to see how Mark is going to feel!

Got up early, even though again, I went to bed @ 2, woke up @ 4, etc.  Had to brush my teeth and that's another ordeal.  I end up getting the front of my pajamas all wet.  I have to drink from one glass and spit out into another since I shouldn't bend over the sink and possibly cause a bleed.  I use a "dry mouth" toothpaste and mouthwash Celia recommended that helps - otherwise, even the kiddy toothpaste was almost too strong for me.  I have cuts inside my mouth and that stings if I rinse with anything stronger!  Since I've had that tension headache I haven't worked with my Therabite lately, so I need to get to that again.  Very hard to get way in the back to brush and I'm having some dental problems.  I can't imagine having the luxury one day of being able to brush normally and not worry about a bleed!

Let me include a couple more photos of my darling furry children and I'll try and add some photos of our anniversary later!  Take care everyone - we appreciate all your love, prayer and support!  I've made a big turn around thanks to my sister Celia.  For some reason, it finally clicked when we were talking the other day about my having a bleed.  I allowed that to shut me completely down and I would vegg. on the couch all weekend.  I know she's seen me having a bleed and completely understands what I go through, but she gently reminded me that I always do survive each bleed, so maybe I shouldn't let it get to me so much.  She is completely right!  I can't let that define me!  I can't let that run my life and live in fear of the next bleed!  If it happens, then I just have to deal with it and move on forward with my day!
Your prayer gives me the strength to deal with everything this avm throws @ me - thank you for taking this journey with us!  I'll blog more soon!
Love,

Cyndi

P.S.  Isn't this a darling puppy?  Mark and I stopped @ one of my favorite stores on the way home from work and Bonnie was with her mommy shopping @ Gatherings! Here's another cute "dog" I saw on the counter @ Gatherings!  Oh, and look @ my Moms beautiful orchid cactus! Then I had to include this cute photo of a Brussels wearing a sweater that I saw in a dog magazine!

As always, I welcome any questions or comments!  You can reach me @ dulce@grandecom.net or schumancynthia@gmail.com

December Embolization 2012

Hi again!  How is everyone?  Ready for the holidays?  Well, Celia and I just got back from CO from my having another embolization done @ Swedish.  But before I start talking about that, let me show you a photo of me with one of the wound care techs @ Dr.'s Regional hospital where I go twice a week!  Her name (nickname) is Miro and she is a doll! We live a few blocks from the hospital, so I go to wound care, then on to work on some mornings!  There have been times I don't feel well or up to dealing with avm issues, and it's people like Miro that help lift me up!  She is spiritual, kind and always has a hug for me!  She knows how much I love our furry kids, so she lent me a book about a dog and also got me a couple of Twilight posters from a magazine!  Cool, huh?

My Aunt Elsa from WA was visiting during Thanksgiving, but I didn't have a chance to even visit with her!  While she was in town, I had a couple of bleeds, so I didn't want to move off the couch!  Mom was nice enough to bring her by for a few minutes while I was @ work, so we had a little time together!  You can really tell how much paralysis I have in that photo - ugh!  I asked Mandy, one of Dr. Yakes P.A.'s about the possibility of having anymore paralysis - she said there could be some, but there is also I might regain some feeling back depending on how the avm situation settles in the end.  I can understand why people stare when I'm out in public, but I still wish they wouldn't!

Several co-workers had been sick and sure enough, by Friday afternoon I had picked up the bug!  I immediately started taking antibiotics and Musinex and cough supppresant - I can't be hacking since that sometimes starts a bleed!  I was looking forward to getting to CO, where I feel very well cared for!  Arrived @ Swedish on Tues. - got admitted and settled in for the night!  Had the chance to visit with so many of my favorite nurses!  Some came by to say hello when they saw my name on the schedule - Judy, Laura, Jill (my Twilight buddy), Elizabeth, Burgen, Becky, Jack and even Alex (a/k/a, Jacob Black!) a recent tech hire!  Can't forget Nicole, Kurt and Dave and Zufon!  Got a photo with Victoria - she is so down to earth and always prays for me!  Very enthusiastic and has told Celia she has seen patients w/worse avms completely recover, so she knows I'll be fine!  I tell you, Kim Kardashian has nothing on me when I'm @ Swedish, I'm quite the popular patient!  Even have the papparazzi hounding me!  That's what the guy transporting me to OR called Celia as she was shooting photos of me with her camera for my blog!

Dr. Yakes used 15 cc's of alcohol this time - it doesn't sound like a lot, but I had so much swelling!  My left eye was completely closed and the area under my chin was very swollen too!

I was admitted under Dr. Pinsinski's name, since Dr. Yakes was leaving the country right after my procedure.  Heading to Telaviv and Cairo I believe!  He won't be back for a while, so I had to wait an extra 2 weeks later than my usual appt. time for my next procedure!  Going back to Dr. Pinsinski - he has an awesome bedside manner and we have a good rapport!  Turns out his first career choice had been to be an Astronaut, so he was pretty psyched to find out Celia's brother-in-law is Astronaut Mike Fossum!   Gotta hook up Dr. Pinsinski w/some space stuff when we return in January!

 

I am very happy with how the entire procedure went this time!  No problems or set backs!  I was anxious to get home to my furry kids and to be home with Mark!

 

As always, my sister is very generous and treated me to a new phone case @ the Denver airport from Anthony!  I had purchased a phone cover from him before (it broke @ Celia's on Thanksgiving when I dropped it) and he remembered me and said he had checked out my blog!  So here's Anthony!  I ended up getting a fuschia blinged out phone cover and Celia got a light pink blinged out one!  We had plenty of time to visit as Celia spent time with me in the hospital as she worked on some needlepoint!  I had a couple of books on my Nook to read, so between that and the great staff @ Swedish, I had a very good experience!  Would you believe the hospital food is great too?  Every night for dinner I had the salmon with pinne pasta w/alfredo sauce and cheescake!  Yum! Actually, soon as we picked up the car rental on arrival to Denver, we headed to Sams Dinner (that has been featured in "Diners, Drive-ins and Dives") for some down home cooking!  Had some delicious meatloaf, mashed potatoes with gravy and veggies!

Guess I'll wrap up this entry!  Speaking of wrapping, is everyone ready for the holidays?  I'd like to send out some cards, but we'll see how far I get on that!  For now, I'm taking it slow as I recover from this procedure.  Back to work today and loving it!  Take care everyone, and as always, thank you for all your love and support!  Mark and I couldn't do it without you!

Cyndi

P.S. Had turned in for the night when I felt a trickle of fluid coming out of my mouth.  Sure enough - had a minior bleed.  Just had to get up and rinse my mouth out - didn't even pack it w/gauze!  Whew!

P.P.S.  Got a couple more photos from Celia, so wanted to add these on!  I'm glad she took the pix of me right after getting to the room and sent it to Mark.  Right away he told her I shouldn't have that purple tube on my trache.  I kept feeling the area, looking to cover the opening in order to be able to speak, but of course being out of it, I wasn't able to figure out what the heck was around my neck!  I didn't have my usual anesthesiologist (Wendy or Quinn), so I hadn't gone over what I expect to wake up to w/the anesthesiologist that was on duty.  No biggie - just happy I didn't struggle or feel like I had to sit up right away. Which I probably actually did - Dr. Yakes does an angiogram each time to "see" what's going on and this is the first time I have a lot of really dark purple bruising in the groin area from the angiogram.  Not painful or dangerous, so no problem.  The other photo is just me having fun w/the dry eraser board!
Oh!  Found out too that doc won't be going out of the country after all, so I'll get to see him in 5 weeks as I have been doing, instead of having to wait the extra few weeks putting me almost @ the end of January - which was kinda scary, since I always tend to have problems right before my scheduled embolization.  Whew!

Ok, I just had to throw this in! Aren't the pups just precious?!!

 

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!