Hello Family and friends! How are you? I want to fill you in on all my latest adventures! I had been doing fairly well, but had been having a bleed once in a while from inside my mouth or could feel it running down the back of my throat. I made an appt. w/my PCP to get a blood count and needed 2 units of blood. I'm sure some of you saw the photos I posted on Facebook that day! As always, Mom and Celia are very supportive and took shifts keeping me company during transfusion since I had to sit there the better part of the day! Celia took me out for a late lunch when my transfusion was over - I had been craving the delicious cobb salad @ Waterstreet, so that's where we headed!
I barely got a couple bites into the salad when I felt like I was bleeding and sure enough, Celia confirmed it as she could see blood trickling down my chin. Made it to the bathroom @ the restaurant and tried rinsing my mouth - finally got it somewhat under control and Celia got our lunch salads to go! She offered to stay w/me until Mark got home from work, but I told her I'd be fine. Turns out I had another bleed from inside my mouth shortly after she left. It wasn't a major one, but enough to keep me busy trying to pack my mouth and not get blood all over the place! Poor Mark gets home from work to see me still trying to control the bleed over the bathroom sink. Ugh! So, by this time it's after 5pm, but called my PCP to ask if he thought it was a good idea to get another blood count since I had just lost so much blood. I was so glad when Mark got home because by that time I was feeling faint and he brought me a chair to sit and I threw up. Anyway, got another blood count in the morning @ the lab, and needed to get another unit of blood. So back to the Spohn Cancer Center the following day - this time I told my family I'd be fine on my own. Everyone @ the Cancer Center is so friendly, that I felt comfortable going on my own. Soon as I was done there, I headed in to work! I have such great co-workers - one of them offered to lend me some dvd's and a book from the book club she belongs to, since she knows I can't really go out to movies, as I would worry about having a bleed while I'm sitting in the dark movie theater! The only movie I saw last year was Breaking Dawn Part 2 (because I'm such a
Twi-hard!) and as it was, I fell asleep before the previews even started! Some of the medication I have to take make me drowsy, so if I sit still too long, I'll fall asleep! Mark had to wake me up before the movie started and I took a couple of Prednisone for some energy! Anyway, I thought it was so generous and sweet of my co-worker Lisa to let me borrow her things for my entertainment!
I don't know if I mentioned this in my last blog, but I had written an e-mail to Dr. Yakes P.A.'s and asked why I was still having bleeds when I'm supposed to be "done" w/procedures! Kelly's reply was that I have damaged, unhealthy tissue that still needs to be debulked from the left side of my face, so until that is done, there is a chance of having bleeds. Ok, I guess I can understand that.
So it's finally time for us to go back to CO - the original plan was that I would check into Swedish upon our arrival Tuesday, and have an MRI and Angiogram the following day to see if there was any trace of the avm left. Andie is one of Dr. Yakes P.A.'s and the one who got me registered @ Dr. Yakes office - I wanted a photo of her to put in the blog, so here we are, along with Mona, Dr. Yakes office manager!
Soon as I got settled in to my room, I had some lab work done, and I needed to get another 2 units of blood! Yikes! Meanwhile, it's snowing in Denver and that doesn't make people from South Texas happy @ all! The weather in Corpus Christi would reach up to 80 degrees that day - here is the view from my hospital room!
Here is our car rental covered in snow!
As much as you would think a hospital stay isn't any "fun", I can honestly say I love everyone @ Swedish! Here is a photo of the swan towels @ the window of my room!
All the nurses, techs, clerks, housekeeping - are awesome! I asked for my fav. Tech, Alex (a/k/a Taylor Lautner-Jacob from Twilight) and he was working another floor, but came by right away to see me! He's such a sweetie and a doll - look how he wrote his name on the dry eraser board in my room!
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Caught up on the latest - some of the nurses that have taken care of me are either on another floor or have moved on to another job. I was happy to see my buds Dave and Elizabeth as RN's still there! Plus, ran into Victoria from Housekeeping too - Celia asked me to pass on a big hug to her! Victoria has always been so supportive and assured us I would be fine, as she had seen more severe avm cases (than mine) that turned out well! Another favorite nurse, Jack also came by to say hello! Jack took care of my new buddy from West Texas, Ashley Stanley that is a new patient of Dr. Yakes! Had about 4 Respiratory Techs come by and visit and got me everything I needed as far as supplies - I need to have a moisturizer/humidifier on my trach when I sleep!
I ordered dinner and Mark and I watched one of the free movies offered - Skyfall. Mark fell asleep right away, so then I decided to watch Breaking Dawn Part 2 and then I read from my Nook for quite a while!
Early the next morning I was taken for an MRI - and I had already spoken to my PCP here about taking a couple of Xanex before going into that tube! I didn't dare open my eyes once I was in there and have a claustrophobic panic attack! The tech had asked if I wanted to listen to music and I said yes! He had put some headphones on me, but I never heard a thing! I had a little bit of a coughing fit while in there, so they didn't get the clearest images, but I guess enough to show what they needed to know!
While I was having the MRI done (about 20 mintues in there - but it seemed like a lot longer!), Mark met a couple from New Mexico I think, that had been to Swedish the year prior to have embolizations done by Dr. Yakes. Mark said that while talking to the couple (the husband has the avm) they just weren't sure whether to continue down this road, of having embolizations @ Swedish. (I'll always respect a patients privacy and won't reveal too much, as it is not my place). Mark assured them they were definitely in the right place to be helped by the people most qualified to take care of the problem! Mark asked me if I wanted to meet them and of course I did! I gave them one of my blog cards and confirmed to them that even if it's been a very rough journey, this is the place to be to get the ultimate help with an avm! I've just recently been able to see that light @ the end of the tunnel, because for years we felt like this would last forever and we were just floundering and dealing with everything the best we could! I know I've probably driven Dr. Yakes staff crazy w/all my questions and wondering "how much longer" ... but they have always been so gracious and supportive! I feel like a little kid on a road trip - "Are we there yet, are we there yet"? I can't tell you how many times Dr. Yakes P.A.'s and patient coordinators have put up with my endless questions and concerns - they are the ultimate professionals and never had a negative answer or harsh word!
The next step was for me to have an angiogram, but from what I understand, Dr. Yakes was coming in from out of town and his flight was delayed, so I was put back in the hospital room until I could get the angiogram done in the afternoon! Luckily I didn't have much of an appetite, but I had gone w/out eating all day! It's finally time to go have the angiogram and I'm super happy to see Dr. Jen Qin, one of my favorite anesthesiologists! Hadn't seen her for severl procedures and she was so happy for me to be toward the final stages of my treatments!
She got me settled in right away and injected the "happy juice" into my IV, so I barely remember anything until I woke up in my hospital room! I do remember Dr. Yakes coming into the OR to give me a hug and kiss and talk to Mark a bit! I hear I had a bleed as Dr. Yakes finished my embolization - so I woke up with packing in my mouth. Soon as I was able to get out of bed, I got that packing out and rinsed and brushed my teeth! Luckily there was no bleeding @ that time!
I always dread having an angiogram because that means I have to lay flat on my back several hours and that is painful on my lower back! Can't get out of bed for several hours as I may bleed from the groin site where the angiogram was done! I'm so happy when I can finally sit up and have support under my knees and be in a sitting position! I was still groggy when Kelly came by to check on me when I was back in my hospital room.
Here I am Thursday morning getting some last meds into my mediport, then haveing the mediport deaccessed since we were ready to check out of Swedish! This sure beats leaving w/purple bruises all over my wrists from IV's - my primary care doctor told me I would love having a mediport!
This morning we are scheduled to meet Dr. Randolph C. Robinson - MD, DDS, FAACS - OMG, right?! (Yeah, I got that last OMG from "Sheldon" on The Big Bang Theory after he rattled off all his own credentials!) Dr. Robinson is the plastic surgeon that Dr. Yakes "sends his babies to" according to the P.A.'s! Dr. Quinn had already told Mark and I what an outstanding physician Dr. Robinson is - we were very happy to hear he was a dentist first as I knew I would be needing help in that area! We were meeting @ Dr. Yakes office - since we heard Dr. Robinson was in the last stages of relocating his office, so it was convenient all around to meet @ Swedish! He's going to be my new best friend!
Found out Dr. Robinson can practice out of Swedish, so that made me feel great! Had a wonderful talk with him - he could tell how supportive Mark was and he asked us to tell him all about what we'd been through w/the avm! Dr. Robinson took some photos of me and I didn't know that Mark had some photos in his phone he wanted to show Dr. Robinson - one of me the year Mark and I met, and a wedding photo of us! I had told Dr. Robinson about my blog and he asked if the photos Mark shared w/him were in my blog and they are! He did take several photos for his own records and said he felt he could help me! (For some, you may not know I've been having surgeries for 25 years trying to get rid of this avm)! I think now I can officially start getting a little excited about my progress! Dr. Robinson asked where I wanted him to start and I told him where ever he thought was best! So, he seems to think he'll work on debulking my left cheek and start working on my dental as some of my teeth and molars have broken and are decaying. It's hard to get in and brush my teeth since I can't open my mouth that wide right now. I use a child size toothbrush and really need to start using the Therabite. ( I've not used it due to fear of bleeding or have been bleeding, so can't use it to exercise my jaw and help open my mouth wider! ) Horrible, I know - so self concious about my breath, especially since our family is in the dental business! Between my brother-in-law Greg being a dentist, my sister a dental hygenist and my nephew Mark makes porcelain teeth and crowns! Dr. Robinson did mention that sometimes an avm can alter some of your bone structure, so I asked if I needed something like that taken care of, would he be the one to do it and to our relief the answer was yes! He said his goal was to make sure I could have a "normal", relaxed expression, and of course w/nerve damage, I would probably have a crooked smile, but I can live with that!
I read and belong to an avm support group on Facebook, and am sad to know so many people out there not knowing what to do if they have an avm, or are suffering because they can't find a doctor that knows how to help, or can't afford to fly in to see Dr. Yakes! Believe me, avms are not just about "appearances", they are dangerous if not treated properly and can definitely get worse unless the doctor knows what he's doing! Avm's will not go away on their own, that's for sure!
So, now the plan will be for me to return to CO in 6 weeks, and I'll have another MRI and Angiogram to make sure I'm completely avm free - since this past visit Dr. Yakes ended up having to use 14 cc's of alcohol on 8 different areas and do an embolization ( I had a "hiccup" like Shalon calls it, and needed an additional embolization)! Dr. Yakes told Mark he felt he really got all the avm this time! I may be able to start the debulking process during the next visit - we'll try and schedule everything soon! It will definitely take several procedures to get completely debulked and reconstructed - we're thinking anywhere from two to three years. Hard to put a time line on any of this, as a lot of it depends on how I heal or the results of the debulking as we go along! Dr. Robinson talked about using the skin from under my neck to put on my left cheek as he felt that area of skin was damaged and the skin under my chin appeared healthier. We'll see - he knows best, so we're trusting him completely!
Let's change the subject for a little bit - one of my favorite new Country singing groups is The Band Perry! Sibblings that have a great sound! Still adore Taylor Swift and Bruno Mars! I'm lucky I can listen to cd's while I work, so that makes the day even more enjoyable!
I miss my furry kids so much while we're gone! We show everyone photos of our babies and tell them stories about how much we spoil Hanz and Bella! Our neighbors have 2 dogs, so Shauna is kind enough to take care of ours when Mark goes w/me to CO! Hanz and Bella love going into their backyard to play with Kaleb (German Shepherd) and Colby that is a lab mix I think! Look @ my little Ewok! He's mommy's angel!
Last weekend we took Hanz to the Vet. for an allergy shot, as he tends to chew on his paws. While there, the Vet. asst. confessed to us that she just had to take a photo of Hanz when she had him in the back room to weigh him, because he's so cute! I had put a pink bow on Bella's collar, as she won't keep them on her ears and she's a girlie girl like her mommy! She was a big hit and got lots of compliments! Wonder if she'd let me paint her toenails pink? It's all about them in our household! I have to say, Mark is really the heart of our home! He works full time and then comes home to take care of three monkey's as he likes to say! He feeds, bathes and grooms Hanzarella and we both adore them and they sleep with us! They are great therapy for me to get my mind off all my medical stuff!
Bella has always been very vocal, and until we got her, Hanz rarely barked! Now, if Bella hears a horn honking on TV she jumps off the couch and starts barking! We let them out for a while when we get home from work and it's so funny watching them running in circles "doing doughnuts" in the front yard!
Ok, back to CO! As we were on our way to leave Swedish, we ran into Darlene, one of my favorite admitting clerks! Hadn't seen her in a while, so it was nice catching up with her!
Mom and Vicente had driven us to the airport for this trip, and Vicente surprised me with some extra cash to get myself something special! Is that cool or what? I have been wanting to return to my cross stitching hobby, so I asked Mark to take me to Fanci Mats and More in Littleton, CO! They are now under new ownership and I had e-mailed them ahead of time to request what I wanted! Here is a photo of "Buddy" (a black Shih Tzu) that the owner was babysitting! What a cutie!
Buddy is a little hard of hearing and couldn't see well, but he seemed to get along great!
Here I am in front of the cross stitch store! Turns out the owners name is Cindy, and she didn't have the lambswool I needed or the pattern I wanted called "A Good Marriage", but she is ordering it for me! I haven't stitched since we got Hanz four years ago!
We have a running joke in our family since we once saw an A.D.D. t-shirt in the What On Earth catalog where the words on the t-shirt start to say something, then the A.D.D. person get's easily distracted and the print of the t-shirt goes on with, .... "Oh look, a chicken"!! I think everyone in my family has A.D.D., so that's why I can joke about it!
Speaking of t-shirts, saw this one @ the Houston Hobby Airport - we wanted Starbucks, but settled for Dunkin' Doughnuts!
Our flight was to leave CO, head to OK, then Houston to Corpus Christi, TX. The flight attendant named 4 passengers (us included) that may not make their connecting flight once we reached Houston. Mark immediately texted our friend Dorinda that lives in Pasadena and she offered to drive us home to Corpus Christi if we needed! Do we have awesome friends or what? Luckily, we were able to make our flight, so we got home on schedule late Thursday night!
Ok, I think I'll finish off this blog entry w/some images I got off of Facebook!
Speaking of Facebook, Shalon mentioned that Dr. Yakes was in the United Kingdom recently, where an avm patient had read her blog as well as mine and was able to see Dr. Yakes while he was there! That makes me feel great, just knowing someone out there is reading and maybe benefiting from the experience that both Shalon and I have had on our avm journey's! I love handing out the card to my blog site, so that people can better understand what having an avm is all about!
Woke up this morning and noticed there was blood on my pillow case. Once I was up I saw a streak of blood on my cheek and had coagulated blood in my mouth. UGH! This is what I'm still having to deal with, but @ least I can say that once I rinsed and brushed, it was ok. I'll be so happy when the bleeding stops completely!!
As always, I love hearing from anyone out there than has any questions! You can e-mail me at either dulce@grandecom.net or schumancynthia@gmail.com!
Thank you everyone for joining us on this journey! Next month it will be 10 years that I've been a patient of Dr. Yakes - I can finally see the light @ the end of the tunnel!!! Much love to all of you!
Cyndi
I really try and not let having a bleed overwhelm me, but somtimes that's so hard to do! I can't live in fear 24/7 of having a bleed, so I carry on the best I can, knowing God, my faith, family and friends are helping me through this!
P.S. Had anyone noticed that I had titled this blog entry w/the year 2012? I just caught that today and corrected it!
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